Hi I am new to this board and have Psoriatic athritis. I live in New Zealand & my son who lives in Australia also has this condition. He is 36. My son was diagnosed before me and it is genetic even though I had been suffering with this for at least 10 yrs prior to my son. Now been aprox 12yrs. It seemed aprox every 3yrs I got a major attack. The last one attacked my knee so bad which has taken over 2 yrs before I could bend my knee again. It is still very painful most times though. Where as my son had a major attack 1st time, to his knee and spine. I was told this is the only athritis that doesn't show up in blood test, only in xrays. Meds: other than predisone I was 1st on Salazopyrin which attacked my liver (boy did that make me sick):dizzy: putting me in hospital. Then was on methotrexate which I also had to stop as that attacked my liver also. So at the moment taking nothing to slow the condition down, only pain relief medication and injections. Interesting to see other meds out there,though not sure if available here in NZ. :angel: Info I have is that it does go dormant for a while but flares up every 2 to 3 yrs. And usually attacks 1 major joint at a time. I have found I have broken sleep at nights, get over heated:blob_fire and have to get up sometimes to cool down. Or when at my worse get up as need to move around due to the discomfort. Does anyone else get over heated? Well to all of you out there all the best and I will cont to read this page.

Hello. How are you today? You sound like I did when I first got on this blog. I am the wife of mcjonval, and YES he struggles with heat also. We do not know about other meds yet because he was only recently diagnosed(though he had it many years pryor)we only know about a couple. He has the MTX, but has not started it yet. All the stuff he hears and reads has actually kept him from starting it. I would like him to try it and see what it does but can't force him to do it. so...ill wait. I had looked up a few sites on PA and found one called EMBREL....understanding psoriatic Arthritis. It was a very good site as far as I could tell with knowing little. Is that the med you take by injection? His PA started pryor with psorisis. He has it pretty bado n head,kness,elbows, and leg. Some toes deformity. later one finger swelled up...then two... etc.... Later he was sick with so many different symptoms. Pain...naussousness...pain in morning, and stiffness. Some dizziness, and dyaria for a short time. Fatigue...sweating heat..intense pain in hands, fingers, wrist, elbows. mental fogginess...confusion...irrability....ur inating alot....(we do not know about this one yet)and so much more too. It has been a VERY hard thing to deal with for both him and myself. I hope sharing these things helps you to know that you are not alone in all this. Not to long ago he wanted to know if it was only him or did others have this, to know he was not crazy. This health board is where we found some help. Keep well. mcjonval ps. If you or anyone has trouble with urination alot let us know ok?

Hi thanks for your reply and yes as I was reading your hubbys complaints I kept saying oh yes, oh yes to nearly them all including going potties all the time. Days vary now how I feel. The injection I have are hydra corticosteroids for the pain, usually every 3mths. When they were taking fluid off my knee they would also inject antiseptic. Yes was told unless you have had Psorasis you can't have Psoriatic athritis. But this doesn't mean everyone that has had or have Psorasis will also get P A. I don't get too much Psorasis. Only had it on my scalp and side of my right foot which is good and clear for the moment. Dreading when it comes back. My friend's husband has it so bad that it covers most of his body. The doctors told him he is the worse case they have seen with Psorasis. He is on MXT and is handling it ok. As so is my 36yr old son. Great I guess for the ones who can tolerate these drugs.but not me and am too scared now to try any other drug. These drugs slow the progress of the athritis but are not a cure. P A gives me enough to deal with with out other organs being attacked. Hope if your husband takes them, he will find they work for him. Just keep a eye out for any side afects and stop them if he gets any. Great talking with you and find this so helpful knowing I am not going mad and not alone. Keep strong and stay well. Kathy.

Hi Katmell. I hope you are doing well today. It was good to hear from you again. I had not checked your post to see if you wrote. I was checking the one that we had put on....GO FIGURE! Sorry.:rolleyes: Yes I will watch him once he does start the MTX. He said he will try on Monday. I think it is because the Doctors are in their offices Mon-Fri and so he would be able to easily call them in case he needed to. He has actually not been doing too bad as far as the pain goes, but I guess thats kind of how it can happen. You are the first person that said they pottie ALOT with PA. That is not easy. I am diabetic and know a little about that. It can be very irritating sometimes. Anyways, the Rummie said that he may have more then one thing wrong but that she wanted to get the PA under control first and then deal with whatever else could be wrong. Ok. let us know how you and your son are doing today with all that you both are going through. Thanks for writing again. mcjonval :wave:

I am from Northern Ireland and have suffered from psoriatic arthritis in one form or another for the past 13 years. I have just started on MTX (again) and also take a lot of other meds - NSAID, anti-sickness tabs, folinic acid, Kapake (co-codamol 30/500) and have been on every other drug under the sun in the past years to help control this thing! One thing I want to let you all know is that it can go into remission. I was on MTX for three years with varying results prior to 2001. I was at the point where they were ready to do some liver tests to make sure I wasn't developing liver disease from the MTX (first I knew about it being so toxic!!) and I went nuts and came off everything, adjusted my diet and increased exercise and guess what? It completely disappeared! So for four fantastic years I was free! During this time I was able to have my children (now 4 and 2) before the birth of my son (11LB birthweight!!) triggered the PA again. Now have just started MTX again, after 12 months of trying every alternative remedy under the sun, which helped but did not stop progression. So am back on the MTX trail again (I too was scared to go back on this stuff but the side effects of the other alternatives are even worse) and am determined to stay on it until the PA goes away again (it happened before, it WILL happen again!!) Mine is in toes, wrists, fingers, back and hips, P is on scalp (anyone know any miracle cures??!!!), elbows and knees. Worst thing for me is managing the pain and trying to live as normal a life as possible. Keeping positive is so crucial, as I know when I am down the pain is worse. Positive energies and blessings to everyone dealing with the nightmare of PA. Love to hear from you all as communication is key -the more information we have the stronger we all are.:) :wave:

Hi Survivor.:wave: Good to hear from you all the way from Ireland. Lot of Irish here at the mcjonval home. :) My husband Just started the MTX this past week....last Monday to be exact and he is waiting to see what happens. Good news is that finally something was given for pain and it seems to work. altrum is the name I think, or something like that, but he is taking a generic brand called Tramadol, only twice a day, along with daily folic acid tabs. He has to also take medicine for 8 more months because of a TB test that was Positive. He dos'nt have it but he still tests pos. Since all this medicine can attack the liver he has to have blood work every couple weeks. He knows how much every one goes through by going through it himself. Even though every one is different, people with PA can relate in one way or another. He also was given a medicine to help him sleep....a muscle relaxer called flexerol. He has the p bad on his scalp too, but what is bothering him more now is this constant itching on his for arm. :rolleyes: The weather has been really hot here and humid too so that has worn on us both a little. Thank God....the Miricle worker who has many ways of making things work. Waiting to hear from you again to tell us how things are for you today. Thanks for writing. mcjonval: :angel: USA

Hi there!

I had a post already completed but it has disappearred - so will try again!!!! I started the MTX on Monday too so fingers crossed for us both! :) Sorry to hear your hubby is getting it hard. It is very difficult for family to watch as they feel so helpless - or so my hubby and Mum tells me. Does your hubby go to any type of counselling or therapy for the PA? I was having hypnotherapy to try to keep me positive and it plus reflexology has really helped. The other thing I have done is to drastically change my diet from one based on sugar for energy to a wheat free, dairy free, no red meat, citrus fruits or tomatoes diet and it has really helped esp the psoriasis. I kept it up for 5 months and now can include small amounts of these foods without it affecting the PA. Goodness you would try anything! :D Anyway at least the PA has slowed me down, as I am a 100 mile an hour person who constantly is on the go. My body told me to slow down, long before my brain did! So I am going to take a career break next year and do my doctorate and spend more time with my family - can't wait:) I am on Tramadol too (150mg slow release - quite good) and amitytripaline to help me sleep at night not that I need it! I fell asleep with my little girl last night and woke at 5am in agony as I hadn't taken any meds - my hubby tried to wake me three times but I was out of it! That's true exhaustion for you, hee hee! Just one thing to reassure your hubby on the possible liver damage - I took MTX for three years and not once was my liver function affected when my bloods were done. Sometimes it is tempting to worry too much about possible side effects when they most likely will not happen to you. The only side effects I have had this week were a sore head the night after I took it and being extra tired. Sickness didn't come this time as I am on three (!!) antisickness tabs. Anyway, I hope things are better today do write back and let me know:wave:

Hi mcjonval and welcome to you also survivor, mcjonval I also replied on your thread. Well I am feeling pretty ok at the moment, only have the odd bad day now other than my feet which are quite sore in the envenings. But I still get over heated, mainly at night. It is winter over here in NZ and I think I tolerate the cold better than the humid summer weather even though when it rains I get a bit of pain in my knee. My hubby thinks I am mad though as I can't stand blankets on me and he is freezing. Spoke to my son last weekend via phone and he doing ok as well. We are both going in remission at the moment. It flares up for me approx every 3 yrs and each attack get worse. But on the high side I should be good for another couple of years. I see both have started MTX and hope it really helps you and your hubby. Like I said before it has helped my son but not me. That is why we have regular blood test while taking these potent drugs, as so they can check if liver etc is not being attacked. My doc has just done some blood test on me and all was good except my glucose was a bit high. I then did a glucose fastening test and it came back ok. He said I am now border line diabetic and will test again in 3 mths. I have been getting quite thirsty during the nights and thought this was due to the over heating. Any comments on this. Well I sincerely hope you are all feeling better each day and as survivor said if nothing else we can look forward to the remission time Cheers for now:wave:

Hi. Katmell....and survivor too. I was not sure what you were asking katmell? Were you refering to the diabetes for the sweating or the PA? I have been diabetic for 25 or so years, and sweating actually for me has lessoned. My husband has a terrible time with heating up though. He talks about it from time to time and wonders if others are getting so heated or if its just him. I have also some of the long term affects of the diabetes and the sweating limited is one of them. I do know that when my blood sugar is up i get thirsty and have to go to the bathroom a lot also. These are signs of a problem with diabetesas well as weight loss. I do not have PA...only my husband does. I have other problems with health that are not about PA or RA. Glad you are both(you & your son) doing well and will have time to rest too.:angel: Talk to you soon, mcjonval Ps.survivor, I am still waiting to hear from you Survivor. :D :wave:

Hi Yall!

I just wanted to jump into your conversations here, just for a few minutes.

I am takeing Methotrexate (6 pills, 1 x week). I have been takeing them for about 3 - 4 months. My rheumy worked me up from 2, 4, 5, 6 pills per week. I am a full believer that this works for some people. I think it is starting to work for me. But, you need a pain reliever until it really kicks in fully! I am taking skelaxin - a muscle relaxer and tramadol (ultram), for pain. I am fixing to start knocking back the amount of Tramadol, probably at my next rheumy visit. Not going to like that tho. Sort of like a crutch, I think.

But, my meds are for Rheumatoid arthritis. I do not think that I have the psoriatic arthritis. I might ask my rheumatologist at my next appt. I have a lot of sores (but could be from the prednisone that I am easing off of. And I itch all the time. I have flakey skin and other things like that. My dr. tells me I hae thin skin. I do not know if that means anything for arthritis of any kind???!!!

OK, yall can have your thread back. I just needed to add my nickel too.

Take care and tell you husband not to be afraid of MTX. I had not side effects from it at all. Just make for sure he eats a meal before taking them.

Wannabe

Hi McJovnal

Hope you got my message OK. I am new to message boards so hope I am doing it right! :confused: Had a good weekend - better than I have had for a long time. Pains much less. Don't know if MTX has started to work, or it may be psychosomatic! Sore today, especially left wrist and thumb - difficult as I am left handed and use a computer for work. Still I had a busy weekend, so I am going to have to pay for that today. Re the heating up my hubby says I am like a very hot radiator at night and I know I can't bear to be cold. Assume its part of the PA and body dealing with the meds. Hope your hubby is feeling a bit better and that the MTX works.

Talk soon - blessings to all! :wave:

Hi, Survivor!:wave: I did not see this till today. Yes you are doing it right I would guess. As long as I check your post. I usually check mine and one other but I'll know to also check yours. Im glad to hear the MTX might be starting to work. The less pain the better! My hubby is still not doing well. He is hot a lot and still having pain. The new med worked for a couple of days and then he started having pain again. He will be seeing his rheumy next week, hopefuly she will be able to do something to help. He is also itching a lot and it really bothers him. His shoulders, wrists, fingers, and constant muscle ache,& the feverish... fluish feeling, Fatigue and weakness with lots of head aches are what is so bad right now. He feels its UNBELIEVABLE! He wonders if PA is all that is wrong with him.(?) Have you ever felt like that? Wondering if anything else was wrong with you? Ok, talk to you soon. Hope to hear you are still doing better. Blessings to you and yours too. mcjonval:wave:

Hi McJonval

So SORRY to hear your hubby is having a hard time of it! The PA does give you that fluey feeling and general aches as well. The headaches could be coming from the MTX. I would have suffered with these ailments too and for a while thought I had Fibromyalgia. But when I looked further into the PA I think these are typical of symptoms of it too. The exhaustion is really bad so I sympathise. Is he on any anti-inflammatories? Like Volteran, Brufen? He really needs to be on these to control the pain. Also has he come off any meds recently? There can be withdrawal symptoms esp with some of the painkillers and steroid meds - I had similar problems coming off both Tramadol and Co-codamol (Kapake or Tylex) in the past (gosh I sound like a junkie!!). His rhuemie should be able to help but he needs to make sure to be specific when describing the pain (maybe you should go with him) as they are prone to jumping to conclusions too quickly (well that's my experience anyway). Hope he is feeling better soon and it will take a few weeks for the MTX to work so I hope he can stick with it, Bye for now. Survivor! :wave:

Hi again McJonval :wave:

Had another thought - has your hubby been tested for diabetes? All that itching and muscular aches and headaches sure should like symptomatic of that? Also underactive thyroid can have similar symptoms too.

Talk soon! Blessings, survivor! :wave:

Hi Survivor.:wave: how are you? Thanks for your letter. Me and my hubby are reading it. As far as the meds that he recently got off of is only the IB's, but he was living on them for about a year and a half. :p When they started the MTX they said NO IB's. He is on tremidol 2 x a day, 50mil, and she is changing it to darvacet. He does not want that!.:yawn: So he is not on any anti inflamatorys.(unless that tremidol is one?) I will go to the Doctor with him as I always do. He does that with me too.:D I don't think he was tested for diabetes or the underactive thyroid, but I will have to ask about his blood work to find out. He is getting more blood work in the morning to C how his liver is. I do know that you have a lot of urinating(and he does) with High sugars, but I have tested him quite a few times with my meter. He has been normal so far. Do you do that too? I can't remember. :confused: In Ireland....is there some kind of help if you can't work From ALL the pain? Do they help you with any insurance there to help with all the meds etc....? My hubby can't work now its too painful for him. How is that for you? Don't answer that if you don't want...its ok. I praise The Lord that I have help with insurance cause mine are very costly. Ok, hope to talk to you again soon. Take care, God Bless You. mcjonval

Hi. I wanted to let you all know that we did go and see the rheumy today and that she told us my hubby also has fibromyalgia :eek: She can treat only one at a time and she will not give him anything more besides the Darvecet for pain. He can take the tremidol with it if it is needed.:rolleyes: That expains more of his symtoms. she said there are too many meds going through the liver, so she is doing more blood work monday, I think, and if he is still doing ok from the TB meds(only a carrier) and the MTX meds..(That is the only way she could tell which of them is affecting the liver or not)...then she will start to treat him for that. OYYYYYYYYYYYYYYYY!:dizzy: I felt like crying in the office. I felt so bad for him. I really feel for you all because I see what it does. Ok. I just wanted to update you. Have a good night and day too. Mcjonval

Hi mcjonval, sorry I have not replied lately but have been crook with a tummy virus that has been going around over here. Sorry to hear your hubby is not doing so good. Poor guy he really is going through the mill isn't he. I will say a little prayer for him. Re your answer from earlier message. No I don't think I'm getting hot through diabetes, I am sure all my symptoms are PA related. Just my GP took a few bloods from me as he just wanted to see that nothing else is going on and my sugar level was quite high on one of the test I had. Though it was only high just the once, so just want me to have more test later to check that I am not pre diabetic. My sister is a diabetic and she gives me a finger test now and then, and all is normal. My son sent me over some ***** juice which he raves about. He is convinced this is helping him greatly. It is an American product and is made from natural jucies. I have started it and will see how I find it. How are you doing also survivor?
I went to link from this web on PA and diabetes and read that alot of the symptoms we have are alike for both these conditions. Maybe that is why my doc checked me out for diabetes also. Well until later take care. Bye:wave:

Hi Katmell. It was good to hear from you agian. Sorry to hear about the virus. That must be hard with all the other stuff that goes on. My hubby did get his blood work back and so far his liver is ok.:) He is going to continue on MTX for now and they will check him again next week. I will be happy when he is not in pain so bad any more. I feel like enough is enough already. Then he hurts again. OYYYYYYYYY! Im glad to hear you pray. We do too! God is Good! Ok, I hope all is being well with you and yours. God Bless You! mcjonval

Hi there
I think your hubby should be on an anti-inflammatory ( it is the inflammation that makes him hurt), plus painkillers. I've taken Tramadol for the really bad pain, and can't remember the name of my regular painkiller right now. But what really worked for me was Nortriptyline. It is an anti-depressant but they have found that in low doses ( where it is no longer an anti-dep) it is really effective for pain relief. One of the major things it does for you is help you sleep, which naturally makes it easier throughout the day to cope with pain. But it also dampens down pain during the day.

It was a godsend for me, and well worth him trying. Personally, I wouldn't get too hooked up on the fibromyalgia diagnosis. Its symptoms are so similar to PA that it could very well be that he really just has PA. Just concentrate on taking the meds. It helps if he can visualise the drugs doing good things inside him, when he takes them, and to try ( I know, it aint easy!) to have a positive outlook. Very, very hard when you are in constant, severe pain. But a trip to a pain psychologist can be a big help, particularly if he seems to becoming fixated on the pain. The more we think about it and how bad it is, the worse it becomes.

PA does make you feel very tired and flu-like. There's a lot going on when multiple joints are inflamed! And the best thing you can do for that is rest, don't fight it. The body is simply telling him what he needs to do.

How wonderful he has you to help him thru this ordeal, it makes a world of difference.

Hugs
Lesley

Hi McJovnal:wave:

Sorry haven't been in touch lately. Have been on hols with hubby and kids and then hubby and I went to Prague on our own - heaven! Just home last night and now feel very sore today. I am planning to keep working until June 07 and then take a career break to do a doctorate and I will get paid to do that, (not much, but enough) and will be able to work completely from home, so I can work around the pain. My current job is very stressful (fundraising for a university) but I think if I could not do something my brain would shrink so the career break is probably my best option. At least I have been able to give birth to two beautiful and healthy babies before I relapsed again. Re costs of meds etc we are very lucky here, as we get our healthcare completely paid for by the state (we are still part of the UK so the NHS - National Health Service - covers everything except the meds but we get these on prescription which is approx $10 us dollars for a 1/2 month supply). Of course I pay hefty taxes and national insurance, as do we all :mad:, so in a round about way we are paying for it anyway - but it doesn't seem too bad compared to what you guys go through. I really sympathise with your hubby and the fibromyalgia. The two often go together and symptoms v similar. They think I might have it too - although it is still a relatively new condition here and they are very reluctant to accept it as legitimate. He should be able to be treated with amitytripaline (nortrypaline) - only real meds for this condition, as Montui suggests at the same time as the PA. I am on this and it really helps, esp with getting into a deep sleep which is impossible with the fibro and the pains from the PA. He also definitely needs to be on some sort of anti-inflammatory. How on earth is he coping without one????!!!!!! I hope your rheumy is on top of all this. Also your general doctor can prescribe the anti-inflammatory so I wouldn't wait around too long. Also he should try to move around and get some gentle exercise - I know how difficult this is for example today I had to go to the pharmacy to get some meds - took me over an hour and I had the car with me and the store is only 10 mins from home:eek: . God help us all! Anyway my thoughts are with you. God bless X

Hi Survivor! So good to hear from you. I wondered what happened to you. Me and hubby just caught up on replys. Thanks team! My hubby can't tolerate tramedol because he gets headaches very painful, and sweats from them. So he has settled for mostly NOTHING at the moment. You asked survivor, "HOW he is handling this?" (OYYYYYYYYYYYYYYYY!!!!!!!!!!!!!!) Not well. They won't give him anti- inflammatorys because he is taking so much meds that goes through the liver, and they feel that would not be good for him at the presant time. All the meds for the positive TB test goes through the liver and the MTX also does, and the IB's Do, so he can't take them. He was prescribed Darvocet(pain killer) but we have not been able to pick them up yet. Finaces are not good at this time. He is up to about 5 weeks I think on the MTX. He does not feel a lot better but we are waiting for it to start working soon.:rolleyes: Oh Montui!(Lezley)Hugs back 2 U. He does still have some trouble with sleep but is taking flexeral to help him.:yawn: He is getting some rest and we take walks to get some exercise as well. Thank God we can! Ok, I can't think of much more to share at the moment, but ill wait to hear from u all again. Survivor, it sounds great all that your doing! Keep up the best you can. Thanks so much for caring TEAM. THAT is truley a blessing from God to us. :D mcjonval:wave:

Hi McJonval :wave:

God love you there, you are both really going through it at the minute! My experience with Tramadol is that you need to keep taking it regularly to help prevent the pain building up. Re the headaches and sweats, I found that if I only took them when I needed them I would get, what I can only call withdrawal symptoms, very similar to what your hubby experienced. What about Tylex/Kapake (co-codamol - 500mg paracetemal and 30mg codeine)? It can be bought over the counter here but don't know about in the US. Obviously your rheumy is trying to protect your hubby's liver but it is really unrealistic to expect him to go on without any pain relief. At the end of the day everything we take goes through the liver but so long as the liver results are normal and they monitor everything carefully I don't see the problem. Life is too short too suffer. What about some kind of intravenous pain-killer or corticosteroid to get him through this bad patch. It is so difficult when money is limited, but it is worth it to get some comfort. I don't know what Flexorol is but hope it helps with the sleep. I think the lack of sleep after having my son triggered off my PA and fibro so you should really push for some kind of drug like amitytripaline (Nortriptyline) to dampen the pain. It definitely helps. I run out of it recently for about two weeks and when I got it again yesterday, I had the best nights sleep in a long time and am actually pretty mobile today.

Good luck with everything and don't let the pain get you down if you can.

Take Care and all blessings xx

Hi survivor. How are you today? Good? We are ok. We went for a 3 mile walk yesterday in a huge park with an exercise trail in it. It was so nice to look at. Exercise is good for us both. Hubby seems to think that the MTX is now starting to work.:) I asked him to just keep taking it for now, and wait. I want to be sure he is having PROGRESS. As far as Codein in the USA....I don't think you can buy it over the counter. The other pills we have not yet heard of. I believe once she(rheumy) is sure that he is ok taking the MTX THEN she will start treating the pain more as well as the Fibro.... IF she does not spend a little more time with him we might get another Doctor, but we are not sure yet.:confused: The money thing is close to not having it at all at the present moment but we have much Faith in God and know He will bring us through this all. He remains very faithful. The flexeral does help him to sleep, it actually wipes him out.:D God Bless You Much! Talk soon, mcjonval :wave:

Hi Survivor! I have not heard from you lately. Are you doing ok? I forgot that I wanted to tell you that my hubby is Irish. He probably has ancestors there. I am sur he would love to see it there someday; I'm sure its beautiful! Let us know how you are ok? mcjonval ( Katmell: Hello. I ahve not heard from you either. Is all good with you? Let us know if you get the chance ok?):wave:

:wave: Hi McJonval

Great to hear from you. So sorry I haven't been in touch lately but you know how it is! Health not great at the minute. Don't know if its the MTX or what but I am totally wiped out these days. Worse than when I wasn't on the bloody stuff! Still I am determined to persevere. Am back on the acid-free diet and feel a bit better - not as bloated and the Psoriasis isn't as bad. The name of the book is 'Curing Arthritis - the Drug Free Way' by Margaret Hills. I like it because it is quite a gentle treatment and the author suffered from Arthritis herself so knows how we all feel. Definitely better than some of the books I have read that try to railroad you into some strict diet and exercise plan that doesn't work, written by those who have no conception of what it is to have this disease. Maybe your hubby would get some help from it. Great to hear he is from Ireland. You should try to come over - it really is lovely here. We went to Wicklow Mountains for our vacation and were really blown away. Hope you are all feeling good today.

Take care and all blessings x

Hi Survivor. Sorry to hear you are going through so much right now. Yes, I do know how that goes. The mountain sounds wonderful! Maybe someday we can visit over there. We are working on geneologys too. It would be interesting to find people there that are related to him. If so they are not known. Hubby seems to be doing a little better, but is still taking nothing for pain. God is Good! He is up to 7 pills of MTX a week. I'm not sure how much that really is. He has about 7 months of treating the TB left before he can stop taking it. :yawn: He never suffered from that, but since he tested positive and takes the MTX they will continue to treat it. :) We are going downtown in the morning to walk in the city and get exercise. We also are going to look at buildings that are really old and still there. They have intersting stuff made in the brick etc... Hope to talk to you again. I will keep you in my prayers. GBY! mcjonval PS Perseverance is actually a good thing to have in your life.

Please stay on topic and keep chatting to a minimum. The purpose of the board is to discuss health related issues.

Thank you

Hello Survivor!:wave: How are you doing? Are you feeling any better? My hubby has now moved up to 10 MTX per week. 2.5mg each. He has not been feeling well for a while now. The Rhumey might consider trying him on enbrel soon. Nothing for certain yet. He says he is fluish feeling(like before) and still in some constant pain....amongst other things. We have not walked much to see any beautiful things(for exercise) to try and get his attention off his illnesses and on something else, if just for a little while. Exercise is so important to keep a good out look on the circumstance that come w/PA/RA. Depression is not good for anyone to suffer with. :rolleyes: Write when you can and let us know if you are any better ok? Miss hearing from you.:) God Bless you. mcjonval

Hi McJonval :wave:

Sorry haven't posted recently. Life is as hectic as ever. Know what you mean about depression - so hard to stay positive all the time. It is a problem I battle with too so know how your hubby feels. The disease takes over everything and getting through each day is so hard and takes so much concentration it is difficult to keep happy on top of everything else. I know my hubby finds it hard to cope with which leads to me trying to do everything I used to do and ending up exhausted and in agony! Still on 7.5mg MTX and feel very run down on it, seeing rheumy in November so expect she will probably put my dose up as Enbrel is so expensive here and there is a waiting list. Heard this is the best treatment ever - part of the biologics drugs. Maybe your hubby could get this on his insurance? Anyway bye for now and keep well. All blessings Survivor x :) :)

Hi Survivor. Sorry to hear all ur going through. My hubby is off and on. Some days good and others not so good. He can get the Embrel here on the insurance he now has but does not want the injections. I would if I felt I would get better. I took procrit for 2 years by injection and I felt a lot better. (it was for anemia w/kidney desase.) Any ways he is doing a lot better then when I first asked for help for him so many months ago. Let me know if you are improving over there ok? Talk soon. mcjonval:wave:

Hi everyone,

Have been reading all your notes tonight. I have PA and have been on sulphasalazine, leflunomide and methotrexate. Massive problems on MTX so now back on sulphasalazine. MTX caused liver problems and hair to fall out, which was very devastating.:eek: I live in England and have an excellent understanding GP and excellent Rheumatologist. I have arthritis in hands, feet, knees, elbows and neck. I get very tired and swollen, and hot, and headaches. I find this disease very frustrating as you never know how you are going to feel from one day to another, so booking outings etc is very difficult. I work 5 hours a day, and after a lot of time, my employers have now accepted my problems and are very good.:) Have recently upped the dose of sulphasalazine and end up sitting in a vest with the window open because I am so hot, I am normally a cold person so this is bothering me, as last time I had hot sweats was when the mtx was affecting my liver. Has anyone elsehad liver probs on sulphasalazine?

Ronnie

Hello Ronnie, Sorry to hear you are haveing so much trouble. My Husband has PA also and what you describe is the same as he has described. (for the most part) He changes from day to day also and it gets a bit discouraging to him too. He has never been on the medicines you have been on....but does get the hot flashes from MTX. he is on the highest dose of it and they are watching his liver which is so far very good. He has had trouble with cloudiness a lot lately, and also a pin like feeling in his eyes. It happens almost every time he take the MTX and is relieves a few days later usually. It is however very strange. Do you suffer from that too? Let us know how you are today. Keep well. mcjonval:wave:

Hi
Im a 20 yr old from Ireland, I was diagnosed with PSA in febuary of this year although Id symptoms from as far back as 2000 but I never did anything about it just used over counter pain relief, but this year I the morning stiffness and all pain became too much I used set my alarm for 6am so I could get up for 8 without anyone realising I was so stiff it was when away for a weekend with my mom when I cried all night in my sleep and couldnt move for 3 hours in morning she decided to make me go to the doctor, since then its been a whirlwind It affects almost every joint, ive psorisis on my scalp and a few skin patches its the pain and swelling and stiffness in my joints that really bother me I also have bowel bleeds and chronic anaemia asthma , hypermobility syndrome and history of ovarian cysts and aterial clots i had major surgery to correct this and since then it seemed to kick this off, I first was tried on difene 200mg a day then added deltracortil of 40mg reducking down to 5mg this helped settle it but once i came off the steroids it flared up again so the decided bcoz of this and errosive signs on my bone scans to start me on methotrexate, im on it 4mths but im still in agony and get really bad swelling and redness and pain, im now on MTX 15mg, 15mg of deltracortil(predenisol) 200mg difene a day 80mg oxycontin, oxynorm5 to 10mg as i need it and 400mgtramadol and 4gsolpodol 100amitriptyline 7.5mgzimovane 20mglexapro, 40mg nifedipine, 40mg nexium, im on stemitil to help the nausea, ive steroid creams nd lotions and folic acid to help control side effects of MTX yet im still losing my hair and getting lots of infections and even on iron injections twice a week im still chronically anaemic witha Hb of 10 which is high for me as it was 7.6 Im wondering if anyone has had similar problems or does anyone have any advice for me im v depressed and feel very isolated by this disease and would love to hear from ppl who understand where im coming from, thanks for taking the time to read my message hope to hear from some of ye.

also is anyone on humira?? my rheumotologist is talking about starting me on this also
and im waiting to see my pain specialist to review my pain meds adn get me better pain relief
i find heat pads very good too if that can help anyone
chell xxxxx:)

Dear mcjonval,

Bit fed up today as my drug dose has been doubled (two weeks ago) and my liver is playing up already. I feel rough and have bad pain in side. I have now on these disease modifying drugs for 3 years and do not seem to be getting anywhere apart from suffering from loads of side effects. My joints have all flared up and I feel taking these drugs are a waste of time now. I have been on them all, and cannot find one to feel good on. I have now asked my gp if I can have the steroid jabs instead. Awaiting for call from Rheumatologist. Just a nuisance all this pain all the time, and getvery low at times.

Hope you are both ok. Ronnie

Dear Chell,

Just to let you know that I use Betascalp on my head as I have psoriassis in scalp still. I have arthritis everywhere and have night sweats, and hot flushes on the disease modifying drugs. If you read my other posts you will see that I have tried all the drugs for arthritis now over a 3 year period and do not seem to be getting anywhere. My knees are very painful, my wrists were so bad they have given me a jab to help with the pain. I really want to get up on the dance floor and enjoy myself, and it is so frustrating not to be able to. I am so sorry to hear about all your probs. Hope you are feeling bit better today. If you want to ask me anything please do not hesitate.

Ronnie

Dear Ronnie
Im sorry to hear your not having great success on DMARDS im on MTX now over 4 mths yet am having daily flares and am in constant agony im on huge doses of oxycodone and other pain medication sleeping tablets the lot, im on anti depressents they help a bit but im in agong at the moment and ive been even getting suicidal thoughts but Ive shared how I felt with my mom and we went to see my GP and she says its reactive depression to all the pain so she doubled dose my oxycontin and the oxynorm so im slightly more comfortable. Im meeting for the first time a new pain specialist tomorrow so im very nervous if he cant help ill be in bits. I see my rheumotologist monday im still trying to get off steroids ive had to stay on them continuosly since may to conntrol my swelling and symptoms but im still getting bad flares, shes not to anxious to start me on Humira (anti TNF drug) but if the pain specialist cant help me then im going to have to insist on trying something new have you tried any biologics? ya I get awful night sweats and I get cold sweats during the day its horrible. Im doing a lot of hydrotherapy and physio have you found either beneficial?? ya im using betacap but still i get bad patches but what can ya do.
Can I ask where you are from?? Im in Cork in Ireland
Hope to hear from you soon
Also my gp spoke of injections into my most painful joints but its not steroids somehing else to relieve pain are these what you have had??

Hi Chells,

So sorry to read your problems. Please bear in mind you are important to many people, and not to think life is not worth living. They will get you feeling better soon I am sure. I have got very low as the disease is ongoing and will never go, but we need to keep trying to make life more comfortable. I have been told to stop this drug now as my bowels and skin are awful. They want me to attend the acute assessment ward next week to see what they can do for me Seem to spend most of my life at clinics, doctors and hospitals! I live in Bedfordshire in England and have a wonderful GP and excellent rheumatologist, unfortunately for both of them, arthritis is a debilitating disease and I feel they struggle to find the best treatment for their patients. Writing this before heading off to work. Do you work? I struggle everyday to get in as my stomach is awful in the mornings on these drugs and I ache badly, but I am determined to carry on as long as I can. I take diclofenac for the pain, and I have had injections in my wrist, knees and spine I have also had the steroid jab in my backside to help me feel good all over. I like this jab as it does improve things, trouble is steroids have just as many side effects as the dmards. I could hardly move my wrist three weeks ago, they gave me a jab straight into the joint and it was almost instant, I now move it fine, trouble is the other one is playing up! I have splints for both wrists, but don't wear them at work as don't want to look old and decrepid. I am 49. How old are you? Please keep cheerful, it really will help. These boards and forums are great as you see how many other people cope. Take care. write soon. Ronnie:wave:

hey Ronnie
No im takinga year out Immuch too ill to do anything I have aplace in birmingham to study radiography but i differred it until next september when I hope to have better control of the disease. I know im on steroids since may non stop my skin is split in places as its so weak, and my hair is falling outfrom them and the MTX. Im off for a ct scan in lil while then off to meet my pain specialist, Im on difene fo rteh swelling but dont find it much good for teh pain im on oxycodone for that and oxynorm and tramadol and solpodol i dont know if you are familiar with such drugs. I have only recently turned 20 but feel much older Ive had bad few years with other medical problems also and needed many surgeries. i am unable to move for hours in the morning so fair play to you making it to work. Its hard not to let it take over isnt it im trying to regain my life back from it. My family keep me going and Id never harm myself as it would hurt them too much but still there are days i dont want to be here but thats reactive depression for you.
So how are you feeling today??
I know how you mean i am constantly hoping between hosp clinics docs appts scans physio hydro everything its crazy
Hope to hear from you l8r
Chell xxx Ill let ou know what happens with the pain guy

Hello Chells,

Hope you have had a good day today. I felt terrible this morning, but gradually got better during the day. Perhaps stopping the dmards yesterday will help. You are so young, what a shame you are going through all that. Hopefully you will get some help with doc. Let me know. If your hair is coming out a lot, try using zinc tablets. Maybe someone has already told you, but my reumatologist said they help to thicken hair up. My hairdresser also gave me a spray to use to help regrowth. As oon as Istopped the mtx my hairstarted coming back, curly, but it came back!:dizzy: Nice of you to talk to someone a lot older. This afternoon I bought a hair streaking kit, and decided kill or cure and did it, thought I might find all my hair in the hat!:eek: Didn't and it looks good. Helps to cheer me up. I always try to look my best as it makes me try to be normal. Sounds daft, but I am sure if I gaveup, dressed badly and looked a mess, I would feel iller. (not sure if thats a word but its how I want to explain it to you. Keep your chin up, write soon, take care. Ronnie:wave:

Hey Ronnie
Glad your hair came out well, I must try the zinc so, ive long brown hair but its really thin now. I understand what you mean by making an effort and looking well people treat you a bit more humanly I think I do my make up almost every day even if Im not doin much it helps.
I got on great with the pain specialist he is lovely and is sooooo funny, he also has RA so he really understands where Im coming from he hated MTX and is on biologics now and is flying on them, he has stopped my oxycontin and difene and put me on morphine patches and an anti inflammatory called arcoxia he said ill have few bad dats with some withdrawls ahead but hopes itll kick in fairly fast and long term Ill get better pain relief
Im going back to see him this day two weeks
I also did a bit of shopping and bought some warm cosey clothes to help me with the coldd so that cheered me up to
By the way age is merely a number, its great being able to talk to peopl of any ah=ge with the same disease
Hope to hear from you soon chell xxx:D

Good morning Ronnie
Ive had a terrible unsettled night with a lot of pain fell asleep sitting up and slumped over back and hips now flared up. So Im just going to take some painkillers and get some sleep. Its now 7am although i started to write this around 5 I was in and out of sleep. do you sleep ok with the PSA??? I suffer from terrible insomnia but am on sleeping tablets, the insomnia has to do with the pain and the reactive depression, well Im off to make a cuppa then probablly get Iain ready for school then go back to bed, (hes 4 and is my saviour my baby bro he keeps me alive and going when things get bad). Hope you feel better this morning than last.
Talk soon, take care
Chell :D :) :wave: xxx

Hello Chell,

Sorry to hear about your bad night, just sending you this before I shoot off to work, my right wrist is hurting very badly, my knees and ankles haveflared up, I hardly ever get a good nights sleep! I woke up this morning at 4.00,:dizzy: tried to dose off again, but find it hard. I probably only get few hours every night. Little ones are lovely to help you through the day, I have a grandaughter who is 12 weeks old now, she is lovely and she has given me a reason to struggle on every day, I do not want to get to the point where I cannot hold her or baby sit, that would be very upsetting. I do not feel like work today, but with the hospitals, clinics and doctors, I am lucky still to have it, and try not to stay at home unless I am really unable to go in. Have an easy day, get the painkillers down you, and stay warm and cosy and watch rubbish on the tv. Speak to you later.

Ronnie xx:wave: :wave:

Hey
sorry to hear you'd a bad night too, and a flare, im all swelled up and red too so think thats why Id such restless night, Im after loads pain meds, im seeing double im so exhausted,right this minute Im fairly comfy but Ive had a considerable amount of opiods so I'd want to be, Ive gone back to bed as I need some sleep so Im jus bout to put my laptop off the bed and snuggle up snd sleep until hopefully 12ish the thats time to start my morphine patch so even if I maybe get 2 hrs sleep I'll be able to get up well downstairs to ly on the sofa Ill have to rest and keep my legs up with the swelling as it sometimes gets so bad it can compress nerves and I get really painful sensations like sharp pins and needles and numbness some of the time ***arre I know. Aw your grandaughter must be so special to you so, do you have many children and grandchildren??
In my family I'm the oldest then my sister Niamh is 16 and my lil brother Iain is 4 and then my Mom and my Dad they are great i love my family soooo much.and my puppy elmo hes 10months now hes a springer spaniel my Dad bought him to cheer me up after I fell in love with the puppies brother Dad went on a mission and there was 2guys left for sale and I got elmo then.
Hope you feel lots better as the day goes on talk to you later
Mind yourself Chell xxx

Hello Chell,
Hope you are feeling better tonight. Taken it easy?:cool: I love dogs. We haven't got one at the moment as we had a very sad time two years ago where I lost one poodle then then six months later I lost my other one. I loved them dearly like my babies, and cried and cried when they were put to sleep. So I decided no more dogs and got a Ginger Cat and called him Stan. He is lovelyl and has made me get over the dogs. For the first time ever this week I have struggled with the typing as my wrist hurts and hands are swollen. Need a two week cruise round the meditteranean Ithink!!

Have you ever tried leflunomide? I found that really helped my joints - it is a DMARD and is very powerful. It gave me diarhorea badly, but it really was quite effective. I was very sad to give that up as my skin started to go pigmented and I have white and brown patches over my arms and my neck. All the drugs seem to have different side effects and it is so hard to find the right one.

We have found rat and mice droppings in the kitchen at work, and I immediately panicked as my immune system is so low that I worried I may pick up something horrid. I will have to look into what effect it would have on me. Do you think I should worry about it?

Say hello to Elmo and give him a stroke from me. Speak soon. Ronnie:wave: :wave: :jester:

Hey
Well Im fairly wrecked my patch isnt sticking on too well and is meant to stay on for over 60 more hrs so i dont know what to do so im going to calling into my chemist tomorrow and see what i can do,
Oh lord I hate mice and rats soooooo much,I wouldnt get overly concerned but I would make sure everything is thoroughly cleaned and make sure all food is kept in a tupperware container wash everything before use, Im so sorry to hear about your poodles, Im havin bad side effects from some new medication i keep coming out in a rash and get really itchy so Im also starting on antihistamines. Im hoping tonight that ill get a goodnights sleep. ive lots of company now im up in my room with my sister and five of our friends watchin chicken little and have lots more to watch its great as Im not well enough to go out.
Do you have any plans for the weekend?Or do you work at the weekend?
Talk soon
Chell :wave: :D :wave:

Hi Chell,

Hope you enjoyed your night with your friends. I had a pretty sleepless night and feel very tired today.:yawn: Been and got food in for everyone, then sat down. Thought I would send you a line. We are not doing anything today, watching x factor and celebrity jungle tonight. Tomorrow my little grandaughter Megan is coming over with my son, so that will be a lovely afternoon. One thing someone recommended to me is a spray called nutmed - it is excellent, as soon as my knees hurt I spray it on and they warm up and ease a little, excellent for bad necks as well. I actually sprayed it on my hands yesterday and put my splints on, they eased a little. Hope you have a lovely weekend,

Take care, Ronnie :wave: :jester: :wave:

Hello
Ya I had great time, Imjust about to try get up now its past 11!!!:eek: :yawn:
i use a fewdifferent gels ones called biofreeze it really helps numb it and the other is prescription only, difene 1% gel and i occasionally use tiger balm or heat.
Ive lots heat pads they really help me, I love the jacuzzi but its not really good with this morphine patch.
Have a great weekend and I hope you will be feeling well, if not do what we so often have to chin up and smile, but please let me know how you really get on.
Bye for now
Chell :wave: :cool: :) :wave:

Hi Chell,

How r u tonight? I have a bad Saturday (very close friend of mine was attacked Friday night and face badly hurt). Sunday much better had my little granddaughter here all afternoon, I am very puffed up and achy, hands getting very bad now. I am scared as to how I will cope if they get any worse. Steroids may help next week. Going to bed now as it is getting late. Take care of yourself.:jester:

Ronnie :wave: :wave: :)

Hey Sorry to hear about your friend and you having bad times, Im not feelin well, in pain and have nothing to take for break through pain which is really upsetting me and it has to be a pain specialist who prescribes the fentanyl and i dont see him again until thursday week I may have thrown my self out the window by then, Im seeing my rheumy tomorrow straight after my hydrotherapy Im doin a little research on other DMARDS if you know of any or any other ones youve been on that you havent mentioned will you please write them to me,I plan on having a list of some and discuss them instead of or with the MTX as Im having way too many flares and much too much swelling even on 20mg of streoids its been that dose for about 5 weeks now like it goes up and down but I cant get down off them without flaring really badly and I went on the MTX to enable me to come off the steroids. Tonight Im really upset about this and alot of other personal problems so Ive taken an extra sleeping tablet and hope to get off to sleep sooner rather than later well just after i jot down few DMARD names.
I hope we both have a better day tomorrow.
Thanks for all your messages and listening to me moaning I really appreciate being able talk to someone who really understands.
Talk soon Chell xxxx

Hello Chell,

You sound down again, hope you are feeling better tonight. The DMARDS I have taken are as follows:

SULPHASALAZINE - made me feel generally poorly, nothing specific

LEFLUNOMIDE - Felt really good on this, didnt want to come off. Gave me chronic diarhorea, but got used to that. Skin went pigmented so taken off it.

METHOTREXATE - Felt ok on this, hair fell out though which is devastating and my liver count shot up so high I was hospitalised for two days. Liver usually reads ast/alt 24 shot up to 152!!!! My liver was getting damaged so will not be able to go on it for a while.

STEROIDS - Make me feel brand new when I have the main jab in my backside, but cannot have these too often.

Tonight, I have a terrible pain in my stomach under my ribs and keep going very hot and sweaty. :dizzy: Will have to call doc tomorrow if it carries on.

Hope that helps your notes. Have a good evening. Write soon :wave:Ronnie :jester: :jester:

Hey
Sorry to hear your not feeling well I hope it settles down by tomorrow. Its 1.25am now Ive spent the past hour getting sick after taking MTX earlier tonight Im after more antiemetics (things to stop you vomiting) and its finally stopped im sitting in bed now feeling miserable and in pain but should feel better in about 15mins Im just havin a fentanyl (stronger than morphine!!!) lollipop there called actiq Ive been started on them today as im having a bad flare and could hardly walk nearly all my joints are afftected when i flare unfortunately,went to see my rheumatologist today and she thought I was very bad so she gave me the highest dose steroid injection into my a*s and thats helped my hands a good bit but they still hurt its just im able to move them again so its definately brought down some of the swelling but my toes ankles and knees are still very swollen and my lower back, but its brought down my finger and wrist swellin and one of my elbows is less swollen and my jaw has gone down a bit but im still rather uncomfortable.

Basically the outcome of my meeting with Sineád my rheumy was, the steroid injection,better breakthrough painrelief so we got onto the pain sprecialist and he said hes give me the actiq lollipops, my oral steroids are increrased too, my MTX was increased to17.5mg today then up to 20mg next week,and then after 3 weeks at 20mg if im not too bad I can reduce oral steroids by 2.5mg,and ive to let them no how im getting on and im to ring next week if Im not much better after the week, so please god I will be.and we decided today that if in teh new year im still having daily small flares and the big flares and i cant get down off the steroids then its time to change my medication, but i can go up to 25mg of the MTX before then.

Im very stressed and upset with everything thats going on and my Nan is back in hospital (shes 66 and is dying from lung cancer which she got due to unsafe industrial fumes where she worked) which is tearing my heart apart as we are really close to her myself and my sister shes a gr8 nana and an amazing friend and its so hard to see someone else you love in so much pain and suffering so much.
My liver tests are 58 they have gone up by 2 but Im suprised it still functions with the amount of medication Im on I take over 30 tablets a day its madness,
Anyway its now 1.47am and im in much less pain after my lollipop and very drowsy thats why it took me so long to write this, im off hopefully to sleep now.
Talk to you in the morning well probablly afternoon ,its 1.54 i keep dozing off, i really hope your pain goes away and the feverish symptoms settle down,please let me now asap how you are
I get cold sweats alot do or did you suffer these at any stage, ive many other medical problems as ive mentioned and a lot of meds so it may just be related to one of them.
Goodnight, well I hope your already having sweet dreams, Ill talk to you really soon and ive my fingers crossed you feel lots better
Luv Chell xxxxx :wave: :D :wave:

Morning Chell,

So sorry to hear about your Nan, it is always sad when close family members are suffering. You may find you are feeling worse because you are getting stressed about Nan. Don't forget Psoriatic Arthritis stems from psoriassis and that always gets worse when your body is stressed. You seem to be taking quite a mixture of drugs and painkillers, do you think sometimes too many is as bad as none? When i stop them all I feel much clearer in my head and stronger in my mind, but obviously all my joints hurt. Sometimes some drugs can make you feel ill themselves without taking into account your illness.:eek: :eek: Try to take your mind off things, have you done any christmas shopping? I did all mine in my livingroom!;) The internet is a very handy thing when you do not feel verywell. Feel the need to go tothe shops just to see the Christmassy things, but at least I havent got to lug heavy bags around. Feel bit better this morning, its usually evening when I am tired. Hope you had a good night after your lollipop! do something nice today. Speak later, Ronnie :wave:

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Thank you.

Hello Chell:)

Are you still about? Can we still chat? How are you doing? I have had to stop all drugs as stomach is very painful, bowel probs, and pain in lung! All happened this week. Waiting for hospital appt next week. All my joints are swelling up and I keep going hot. Fed up with it all. Had a very bad week at home as my son was attacked in his office by two youths coming in asking for mobile phones and money. It was awful. Trying to have a lazy weekendto get myself feeling better. Booked Monday off to rest.:yawn: Just watched X Factor who do you like?

Hows all your aches and pains? Have you managed to have a good week? Did your bowel probs start because of the methotrexate/dmards? I am worried what is wrong with my stomach as it is extremely painful. Doc thinks I may have ulcer from the dmards.:dizzy:

Hope you find time to reply, if not I will understand.

Ronnie:wave: :wave:

Hello. I am sorry I have not been on here in a while. Sounds like you two are going through so much stuff. :eek: My husband is doing ok, but still has some problems. We are going to his Rheumy tomarrow and will see what she wants to do. Maybe Embrel...but not sure. He still has stiffness in his finger, diarhorea,(sp) stomach cramps, lot of headachs(but better this week)and once in a while still getting the flu like symptoms. I know it is very hard for you both and for my "H" too. We will keep you's in prayer. We believe that the Lord is a great healer and is able to do mighty things. We pray for him and for me, as I have kidney desease, diabetes for some 20 odd years(shots), blood pressure( under control), cholesterol.....and was on Procrit for a couple years because of the anemia. I was taken off a few months ago. I have had lazer surgery in both eyes due to Diabetes ect....But they are well. I went reasently to have them checked and he saw no problems. TG!! Well, at least I can understand illness and how awful it can be even if I dont understand every thing you all go through. I feel so bad for you all who have so much pain and all that you go through physically and mentally with the psoriasis, and every thing else. I see what My "H" goes through. Hope to hear from you all again and to hear how U are doing today. GBY! :angel: mcjonval :wave:

Hey guys
Sorry havent replied sooner my hands were too stiff and swollen to type, but after steroid injections into my butt and incresased dose of predenisole and painkillers Im able to move my hands again, Ive come off methotrexate and am now on arava I only have so far missed one week of MTX but I have no nausea and vomiting although my scalp psorisis is terrible, Im now or arava and it makes me dizzy and a bit drowsy for a while after i take it but i just have a rest and feel much better than on MTX Im really hoping this improvement will continue Im back to the Rheumy start of january and in contact all the time but if im still experiencing bad symptoms I will be started on Humira(biologics) Ive most of my shopping done for christmas Ive done it in bits since october so Im planning to take it easy next week and try be as well as possible on christmas day as I see most of my close relatives and ive always kept a brave face on, only my immediate family know how bad I really get. I have infortunateky developed 3 ulcers from tiny wounds breaking down as a result of a depressed immune system and Ive also got a burn on my back from a heat pad so I am having regular dressings done and we are trying to keep the two burns from turning into ulcers too, 2 of the ulcers are superficial and healing well and one is a little deeper but is healing slowly. do ye find the cold affects symptoms?? im getting a lot of pain with the frost over here its really cold the past few days and nights and Im gettin really sharp pains


Ronnie - I hope you are on something to help woth the symptoms now, are you on any PPI's ( medication to protect your tummy) I am and its preventing any major problems but I am on a high dose as I get terrible heart burn if I dont take them. Are you all set for christmas, do you spend it with family??? I hope your son is ok now well I imagine itll be hard to get over thats really a terrible thing to happen. Hows your grandaughter??

Well hope to hear from ye soon, im off to sleep now(I hope) its 6.15am
Bye xxxx

Hello Chell!

Lovely to hear from you again! Been bit worried about you. Yes, getting ready for Christmas, like you had large dose of steroids jabbed in my backside to make me feel better for christmas. Joints easing, but stomach still hurting. Doc watching it, giving me omezaporale or something likethat, hasnt done a lot, so bit worried about it. Hands and wrists bad like yours, perhaps its the cold. Fed up with it, so limiting to what you can do. Brain willing body not. My son is fine now thank you, kind of you to ask. Bit scary wasnt it? We had the granddaughter all afternoon yesterday and she was a real tonic. I love her to bits, she is gorgeous.

Know what you mean about putting brave face on for people, someone was shocked the other day that I am registered disabled, he couldnt believe it, said I didnt look ill enough!!!?!!

Christmas will be busy for me, family for three days, and our usual christmas party on 23rd. But love it so much, will probably wear myself out. Still got all following week to get over it.

When you had the steroid jab in backside, did you feel light headed and giddy for days after. I a struggling at moment to concentrate properly, keep typing things wrong, and forgetting things. Supposed to go to work at 11 today and went in at 9! They asked me if I had forgotten (embarrassing). Would like to know how you feel with the steroids.:confused:

Hope everyone out there with this horrible disease is coping ok at this tiring time of year.

Love Ronnie :wave: :wave:

well firstly try not to worry too much about your tummy as stress an change the acidity in it and cause more problems easier said than done I know but just be aware that your getting good treatment.




STEROIDS - Well the injection was 70mg I think but it had very little effect otherthan leaving a big bruise, my rheumy was annoyed it didnt help more so we decided to increase my oral steroids and that gradually helped it, I noticed no side effects from the injection but I do from the oral ones as Ive been on them long term (since may) I suffer from innsomnia and its horrible even with sedation and other hypnotics i cant get a good sleep, another effect is my skin Ive gotten lots of stria and any wounds even tiny little ones get infected I now have 5 ulcers and 2 burns which are taking forever to heal and everything leaves a terrible dark scar I use lots of vit e based oil which really helps but my god I wish it would stop Im young with a mass of scars makes me feel ugly and old at times.my hair is also dry and falling out although some of that is down to the MTX and arava. Are you also on oral steroids at the mo??or a lot??

MTX - Imoff it now 2weeks and its great no more being sick all monday night until wednesday, Im now on 20mg of Arava and although shortly after i take it I feel dizzy an get drowsy but that I dont mind Ill build up a tolerance to it soon and I wont notice thats what happens normally with me and meds that cause me drowsiness
I generally feel better since coming offthe MTX and being on the arava, Im resting a lot which is really helping keep the sweling down but I find it very boring. I cant wait for christmas as there will be all my family off work nd school and theyll keep me company even if im resting. I just have to wrap my presents, get my mom to buy me a new pair of jeans if i dont make it to a shoping centre and im ready for christmas and I cant wait but Im still planning to rest up before and during the holidays so Im as well as i can be.

Do you religously celebrate christmas??

Hope to hear from you soon
Nite nite
Chell:D

Hi Chell,

Not really we do not go to church, but I always used to when the children were small, christmas eve, and christingles and carol services, I loved them, but when the children grew up, we stopped going, shame really.

All wrapped and sorted, just got last minute food shopping. Now started on propanolol to help with migraines, but have heard that this can make psoriassis worse, do you know anything about beta blockers? Or does anyone else out there? Now on steroids, beta blockers, dmards, omezaprole. Hope they are all ok to take together!

Well, expect by now your family are home and your little brother is getting very excited for the big day.:D Do you religously celebrate christmas?

Hope your ulcers and sores get better soon, must be very very painful. Take good care of your self.

Ronnie:wave: :wave:

Hey

Well all my immediate family are home as we live together but other family will be home over the period. My family (most of them) religously celebrate it but myself and my sister dont, we no longer go to mass or have anything to do with our so called religion during the year, we always seem to go to the xmas mass just to please the family members but we do it as a family thing. my little bro is very excited his birthday is on the 28th so hes all excited about his party too.
Dont worry im on all of those meds and tehy dont interact with each other your docs wouldnt put you on them if tehy would, ive been on them all for ages now and theyre fine so try not to worry. sorry to hear about your migranes I used get awful ones but dont get them much now thank god.
Im just back from getting my dressings doen Im now on 2 more antibiotics as some of my ulcers are infected Ive 7 ulcers 3 on my left boob my docs getting onto a dermatologist to see me next week ill see my doc wednesday to check them and see if any new ones develop she thinks theyre vasculitic ulcers(i dunno what they really are) must google it.
We have to do all our grocery shopping still and we will collect the ham and turkey on saturday morning from teh butchers then we are all set Ive 2 more gifts to pick up too but we all nearly organised.
Are you off work at the moment or are you well enough to work??
talk soon chell

Hello,

Went to work for few hours this morning, now picked up a cold, so probably won't go in anymore until 2nd Jan. My doctor is excellent so I am sure I am ok on all these drugs. Got blood test tomorrow morning so hopefully be ok for the weekend. Your ulcers sound awful, you poor thing, you are certainly going through it.

Hopefully Christmas will help you feel better.

Had my nails done today, first time ever, they look quite nice, helps to cheer you up doesnt it.

Ronnie:wave: :wave:

Hey
What DMARDs are you on now??
Id bloods and all my dressings done thursday and my gp had me booked in for appt as soon as they're back on the 2nd of Jan but because of all the ulcers she wants me down to see her wednesday morning even though they're not officially open, shes great doc and is lovely but I was really looking forward to having more than a week without seing a doctor, but what can ya do, my mom is going to do all my dressings over the next few days. My little bro is so funny he came home and gave me big hug and "the kiss" which is 5 kisses between your cheeks forehead and nose (hes soooooo cute) and then asked me how my "oysters" were. He got a letter from Santa and it mentioned about his violin which hes just started to learn to play so hes practicing mad as he wants to show santa when he comes hes planning on staying up all night but he only made it to 11.50pm last year so we plan on doin loads with him on sunday during the day so he'll be wrecked and we can all get to bed at a good time.
Im glad you have a good GP it makes all the difference my one is really nice and great to get things done and seen to and I consider her as a friend and I actually trust her.
If I dont talk to you before christmas enjoy it and take it easy let someone else do all the work or at least get someone to help and have a great time
Talk to you soon
Chell

Thanks Chell.

HAVE A LOVELY CHRISTMAS!!:

Talk to you next week. Ronnie xx:wave: :wave:

hEY
HOW WAS YOUR CHRISTMAS ITS,3 AM NOW IM JUST IN FROM A NIGHT OUT I KEPT GOING UNTIL LAST CALL THE REST WERE HEADING TO A HOUSE PARTY BUT MY MOM JUS PICKED ME UP AS IVE NOW EVEN MORE ULCERS AND NEED EVEN MORE REST
DO YOU HAVE ANY PLANS FOR NEW YEARS EVE??
iM FINDING THE STRONGER MORPHINE POPS AND PATCHES THEY ARE KEEPIN THE PAIN AT BAY
HOPE TO HEAR FROM YOU SOON
CHELL XXX

Hello,

Yes Christmas was lovely, back down to earth now, PA flared up quite badly after doing 4 days of entertaining relatives, Steroids made me dizzy, and feeling it a bit now. Yes, been invited out to party for New Years, but not sure whether to go as the party is in their cellar and I cannot get up and down the steep steps, only trouble is, if I dont go I am a party pooper, if I do I am the old croc upstairs where everyone feels they have to talk to me for a few minutes, hate it. Hate PA and feeling poorly. Would love to go and have a great time, but won't so probably will ring up and cancel. Feel sorry for hubby then, as he either goes by himself or sits at home with me!!! Got some lovely presents and had a great time. Got Hospital twice next week, for skin and for rheumy and blood tests, so back to normal .......

How was yours? got some great pressies? How you feeling?

Ronnie :wave: xx

I THINK YOU SHOULD MAKE A HUGE EFFORT AND GO TO THE PARTY I KNOW ITS HARD I REALLY DO BUT YOU WILL FEEL BETTER FOR IT AFTERWARDS IF YOU GO EARLY AND GET A HAND GOING DOWN THE STAIRS GET A GOOD SEAT AS IM SURE EVERYONE WILL UNDERSTAND YOU NEED ONE AND GET AS COMFY AS YOU CAN AND STAYA S LONG AS YOU CAN, IM NOT SURE YET WHAT IM DOING PLANS ARE FOR MOST OF US BAR THOSE WORKING TO GO TO THE PUB TEHN ALL OF US MEET UP AFTERWARDS AT ABOUT 3AM AT A HOUSE PARTY AND STAY OUT FOR THE NIGHT SO IM NOT 100% SURE ILL MAKE IT OR NOT YET IM STRUGGLING TO KEEP A HIGH TEMPERATURE UNDER CONTROL IT ALSO AFFECTS HOW MY MORPHINE PATCH IS ABSORBED SO ITS KNOCKING ME OUT, BUT IM STILL HOPING TO GO THOUGH ILL PROBABLLY STAY IN BED FOR MOST OF THE WEEK AFTERWARDS AND JUST GET UP FOR GP VISITS HOSP APPTS AND DRESSING CHANGES BUT ITLL BE WELL WORTH IT IF I CAN MAKE IT ID A GREAT TIME LAST YEARS NEW YEARS EVE, i GOT LOTS OF PRESENTS TOO MOSTLY COSMETICS, DIGITAL CAM AND PRINTER CLOTHES, VOUCHERS, CHOCOLATE LOADS REALLY.
MY PSA IS BAD AT THE MOMENT IVE VERY BAD INFLAMATION MY LEFT LEG IS PARTICULARLY BADLY SWOLLEN. BUT IM ON THE USUAL TREATMENT AND ON THE MAX OF EVERYTHING SO IVE JUST GOT TO GRIN AND BARE IT ISEE MY RHEUMY MONDAY WEEK ANYWAY.
LET M KNOW ON HOW YOU GET ON TOMORROW NIGHT
IM OFF TO GET ALL MY 14 DRESSINGS DONE SPEAK SOON
CHELL

Hello Chell, Happy New Year to you. :)

I took your advice, and went to the party. Had a lovely time! party was upstairs and in the cellar, so had choice. Aching this morning, but pleasedto get out. How about you?

Hospital tomorrow to check my skin, as it is getting thin with the steroids and discoloured with the drugs.

Happy New Year to everyone out there with Arthritis, hopefully you will all have some good times in 2007.

Ronnie :wave:

Im Delighted To Hear You Went And That You Had A Good Time, I Spent The Start Of The Night With My Family Then Headed To A Friends House Party With The Girls Who Were Just Finished Work At About 3am, Im Just Home Now, Having A Morphine Pop Ive Really Bad Swelling And The Ulcers Are Killing Me But These Are Great So Ill Be Able To Pull Through Im Just Gettin Changed To Go To Dinner With My Nana Who Is Terminally Ill So Ill, Then We Are Having Lots Of My Parents Friends Over At Home So Ill Keep Going Until Tonight Then Ill Sleep Ive To See My Gp At 10 In The Morning And The Dermatologist At 3 To See If He Has Any Advice Or Idea About All These Ulcers

Happy New Year, Lets Hope We Both Have Better Health This Year
Speak Soon Chell

Morning Chell,

Went to Dermatologist yesterday, skin not being affected by the dmards, so next week going back on them. Leflunomide probably, appt with rheumy on Monday. Decided to take up guitar lessons!!!!!! probably wont last long, but thought it would be something to take my mind of problems. Don't even know if I can do it with my hands, but going this afternoon for first lesson (probably last as well!!!). Got a lovely Pink! electric guitar bought for me at Christmas, so got to give it a go, more than likely end up for sale!!

Hope you are ok, and got on ok at Dermatologists yesterday. How are they treating your ulcers? What is causing them? Do you have a flare up of psoriassis at moment or is it separate thing? What dmards are you taking?

Do you have any hobbies? Can you do them at the mo? We are all a bit limited with arthritis as to what we can do.

Is mcjonval on line? How is your Husband? What does he do to take his mind of things? What drugs is he taking. Interested to hear from others with psoriatic arthritis.

Ronnie xx :wave:

Morning Chell,

Went to Dermatologist yesterday, skin not being affected by the dmards, so next week going back on them. Leflunomide probably, appt with rheumy on Monday. Decided to take up guitar lessons!!!!!! probably wont last long, but thought it would be something to take my mind of problems. Don't even know if I can do it with my hands, but going this afternoon for first lesson (probably last as well!!!). Got a lovely Pink! electric guitar bought for me at Christmas, so got to give it a go, more than likely end up for sale!!

Hope you are ok, and got on ok at Dermatologists yesterday. How are they treating your ulcers? What is causing them? Do you have a flare up of psoriassis at moment or is it separate thing? What dmards are you taking?

Do you have any hobbies? Can you do them at the mo? We are all a bit limited with arthritis as to what we can do.

Is mcjonval on line? How is your Husband? What does he do to take his mind of things? What drugs is he taking. Interested to hear from others with psoriatic arthritis.

Ronnie xx :wave:





Glad your skin isnt affected by the meds, I saw the dermatologist yday and Im going into hospital early tomorrow morning(thursday) and hes doing some skin biopsies of the newest ulcers there tiny red dots when they start so hes doing one of them and maybe more and hes running a few more blood tests and Im being retested for lupus (ive had 4 negative ones so im not worried)

Ive only two patches of psoriasis and ive a bit on my scalp but the thing im seeing the dermatologist about isnt psoriasis as its not related what I have is about 20 small ulcers all over me on my legs, chest back,bum and my boob and new ones are starting all the time, there little cm red things which look pitted with a kind of punched in centre, theyre unusual, they think it could be vasculitic ulcers(due to vasculitis) or another weird connective tissue disorder which people with autoimmune diseases often experience, or it may be some funny infection due to my immune system being suppressed so the biopsies will be to rule certain things out and may diagnose the problem but im aware it may not give us the answer but itll rule a few things out

Hobbies oh how depressing well I used play about everything i could: basketball, soccer, badminton, gymnastics ,swiming life saving courses,camogie and gaelic football (irish sports) was in scouts, loved kayacking,
but I dont really do any of them now, i went kayacking a few times during the summer but was very painful afterwards, I was just back swiming after one lot of surgery then since i got all these ulcers well I cant go right now which is really hard as I love being in the pool and swiming I do physio excersises 2 or 3 times daily and do pilates

They are treating the ulcers at the moment by cleaning them with sterile saline,then drying them a bit then out a cream called polyfax into the ulcer the cover it with a betadine dressing then another meopore dressing(the white ones with sticky stuff on them) it takes a minimum of 30minutes to get them all done, which is annoying

The DMARDS im on are arava same as you (leflunomide) or however its spelt.
considering TNF meds but not until all ulcers wounds infections etc well gone , Im seeing my rheumy on Monday at 12

Who bought you the pink guitar?? well its worth a shot anyway otherwise youd never know until you try if you can do it or not.
Have you been back at work yet?
Do you see all your doctors in the hospital through the NHS?? if you dont mind me asking, or do you see them privately and have health insurance??
I have health insurance and have to see all my consultants privately in their rooms so I pay from 70 to 200 euros depending on which consultant im seeing and ive to pay for all my out patient cts and mris xrays etc, if im an inpatient then my health insurance covers it. I think tomorrow Im covered though as my insurance has an agreement with private hospitals to cover some procedures,
I used also have to pay 50 euro a visit to my gp and 85 euro a month on medications (once it went over 85 euro theres a scheme which the government pay the rest of the cost) but now as Im over 18 and am chronically ill mty gp and social welfare officer made a case and I was granted a medical card so I no longer have to pay to see my gp or the nurse or for my prescriptions which does help but Ive still a lot of medical expenses. The NHS is a great set up compared to here my best friend is in college in bedford and he cant believe the differences and how much better it is than here

Talk to you later

Hello Chell

By the time you read this you will have been to the hospital with your ulcer problems, sorry to hear about that, you must be fed up with them. Hope they have found out what is causing them and given you something to ease them. Are they terribly painful? Ulcers usually are. Poor thing.

I am amazed at what you have to pay for your treatment. Yes, I use the NHS for everything, and I have absolutely no complaints about it. Some people moan about it, as you have probably heard on tv., but I have been extremely lucky, I have an excellent gp and consultant and I have never waited very long for any of my treatment. In Hospital I have always been treated with kindness and consideration and am very glad I do not have to pay for all my treatment. Obviously we all pay towards the NHS through our wages, but it is better than paying for private treatment.

You mentioned that your friend is at Bedford College, is that the Bedford College in Bedfordshire? I live only 8 miles away from Bedford and our children all use Bedford College for their further education. What a small world!!! If he needs to know anything about the area, please let me know. Where is he staying? Does he like the college?

I have gp and blood tests tomorrow and hospital on Monday, aren't our lives exciting? Doctors, Hospitals, Blood tests, Chemists, Drugs, Tests etc, never a dull moment!!!!

Anyway, hope you are ok from todays visit, thinking of you.

Ronne :wave: :wave: xxx

hey how are you
well yes the ulcers are painful the deeps ones burn alot too, i had two biopsied and now have 6 stitches and am ment to take it easy and keep my leg up. no diagnosis yet i hve to see the consultant in his rooms on friday the 19th to get results of the biopsies and bloods, he did give me cream which is helping them to heal after they break the skin. The dressings alone cost almost 100 euro a week its ridiculous.
Here we too pay taxes for medicl services but waiting lists are too long and you dont get to see the consultant much and generally get poorer care so I have to see people privately as many of my problems can be acute and rather than going through a&e and waiting days for a bed and to actually start to recieve treatment I see consultants privately, altouh sometimes I still have to face a&e and days on trolleys, basically our medical system is a shambles.


Well my friend is near to Luton if thats near to that college then thats where he is, he flys into luton airport a lot but is living in bedford i think, hes in his second year now and is living with a group of friends hes getting on great there but i miss him so much as we have been friends for almost 16 years and he is always there for me when im sick he used come see me or ring every night when he was living here when i was in hospital and everytime I used get out of hosp to come home hed be at home waiting for me, hes really part of our family like its his second home, so now this year hes been home less i find it very hard without him we still talk almost everyday but its just not the same like.

How did you get on with your gp? Id my bloods done tuesday and yesterday so Im ok until next week again thank god.

Speak soon
Chell

Hello,

Yes got on ok with gp. Thyroid, cholesterol and blood sugars ok, stomach still bad, pain in chest is arthritis in rib cage and joints in chest, something else to worry about. Felt grotty today, but bit better tonight.

My stomach is so swollen, look like 8 months pregnant! Still lot of people worse off than me.

Shame you miss your friend, can you email him?

Have a good weekend, have some fun, speak to you nextweek. hospital on Monday, like you. Compare notes Monday night!!

Love Ronnie xx:D :wave:

Hi,
I am not being obnoxious, I am sincerely curious: what is left to eat, if you can't have wheat, dairy, meat, citrus and all the other things you listed?

I was recently diagnosed with PA, which until now has manifested as tendonitis in my ankle and pretty severe plantar fasciitis. I am terrified of methotrexate and would like to try anything else I can instead.

thanks,
nyc

well hello
how did you get on with your hospital appointment??? I had an appt with my rheumy in her private rooms then in the hospital to get new splints and some new ones measured up and stuff too, then I had an appt with my GP.

The outcome from rheumy appt and GP appt is im going to give the arava a bit more time and hope it controls the disease a lot better, Ive to reduce my deltracortil to 10mg and increase a different steroid im on DEXamethasone, change from arcoxia back to 200mg PR of difene a day, having all my hormone levels checked , my thyroid and FBCS U&Es ESR (and few others basically lots blood work)my Gp filled 24 sample viles, as Im not getting any periods and Im getting these cold sweats coming out on my face it was only ocassionally snce october but its getting worse and its embarrasing as it wets my hair and my make up slides off and now Im also getting night sweats and wake up soaking in a cold sweat and due to all that i cant keep my morphine patches on long enough and the peel away from my skin and i mightnt notice until hours later when theres none left in my system then im in agony so Im needing extra pops at the moment but still v sore and in pain a lot and Im really in a bad moood due to it all. Im on extra sedation at night too.

Im getting my stitches out on the 19th and Ill have my biopsy results then

please let me know how you got on too xxxx

Hello Chell,

Lovely to hear from you. Sorry to hear you are feeling down. Arthritis does make you feel that way. I had the same as you, rheumy and splints and gp. Back on Arava (Leflunomide) still on steroids. Consultant said Arthritis is out of control at the moment and need to get backon track with the dmards. Back to Diarohea I guess.... Steroids have made my skin thin and bruised and stomach sore. I have been told I have it in my breast bone now as I have been havinga lot of pain in my chest.

Just got home from work, tired, and achy and very low like you. Probably we are all exhausted from Christmas and trying to be cheerful. Sometimes you wonder why do we try to be cheerful when we dont feel like doing it. My car is in forservice today, suddenly felt very useless as needed someone to take me home as cannot walk very far, and now need someone to get me to garage to pick itup - cannot walk down the road to pick it up!!!! :mad: How frustrating. Started the extra drugs today, feel very tired. Glad I am home, not sparkly at all.

Not sure who the message board is for, regarding food. I cannot eat citrus fruits or spicy foods and bread doesnt do me any good. My weight is increasing on the steroids and feel I cannot eat much at all to try to keep my weight down. If you have just been diagnosed with pa, you have a lot to get used to. If I can help, or if you are talking to Chell, I am sure she will give you help too. Don't try to go it alone, it is best to talk.:)

Take care Chell, keep your chin up. Speak soon. Ronnie :wave:

Hi Chell,

Worried about you, haven't heard from you since my last post. Are you ok? In hospital perhaps. Hope you are alright.

Ronnie :)

Hey how are you
Ive not been very well and wasnt on my laptop much, Im in a lot of my pain im having flares everyday and Im exhausted, I was getting a really bad ear ache and migrane on the right side of me since last tuesday and just mentioned I forgot an appt with my dentist,then thursday night i was crying with the pain and while having a fentanyl pop(pain med ones) i felt something hard, my very back tooth around half of the enamel came out so I was in agony all night I drank half a litre of vodka my poor mom was up all night with me and even she didnt object to me drinking itas i was in so much pain and so distressed, ive not experienced such bad pain since Id a cyst in my tummy burst, so i got an emergency appt with a colleague of my dentist as he is on hols and he cleaned out the tooth and there was a big abcess in my tooth which he said is very unusual it had killed most of my tooth and filled up so big it cracked the enamel, so he put a dressing in and temporary filling and started me on antibiotics and I was to come once a week to have the dressing changed, but when I got home after an hour and a half out popped the dressing and filling and I was in agony again so i rang him and he told me to come straight in which I did so they put another nerve block in and after a few xrays we decided the tooth would have to go, as it was the very back tooth it wasnt suitable for root canal as Ive TMJ and my jaw wouldnt be strong enough so out the tooth had to come, I still hav an abcess which is very sore and Im getting terrible pain when it fills up and when it bursts it leaves a terrible, foul taste. Its 5.39 am now and i still havent managed to get to sleep as the pain is so bad. Ive only one day of antibiotics left but my gp told me to come see her tomorrow and she wants to put me back on something stronger, so I may also have to go to the dental hospital but Ill find out for sure tomorrow.
The joys of it all. Im hopefully going to get my biopsy results on Friday my Dad is going to come with me. the dermatologist gave me this cream to put on the ulcers and its really helping.

I have to go tomorrow with my sister to a doctors appointment as she has been having problems with vertabre in her back for about 2 yrs and its suddenly got much worse and she also is experiencing wrist and ankle pain so she needs to checked out and tested for PSA and RA as I have it and as she also has scalp psorisis. So I hope to God its nothing systemic and its just muscular or structural but all we can do is wait and see.

Hows work etc going??? how did you get on with your guitar?

Talk soon
Chell xxx

Hello chell,

So glad to hear from you, I was getting worried about you. So sorry to hear about your tooth, I have terrible teeth problems and I sympathise greatly. Hopefully you will soon be on the mend. I have flu at the moment and my leflunomide has been stepped up and feel sick with that, so gp told me to take a week off work - feel very bad and guilty about it, but just getting my dressing gown on is an effort, so I knew it wasnt just a cold. I am very very tired and weak and hot all the time. the arthritis is out of control and with flu etc i feel I should take the week off, but I have already been told by my boss that work is piling up and they need me back!! What should I do?

Think the guitar is going to be a very difficult project, it is hurting my hands to play, but will try for a while.

Going to watch Waking the Dead that I recorded last night, put my feet up and make a cuppa. Don't you just get fed up with feeling poorly.

Hope you are better today, take care Ronnie xx:wave:

Hi. I am just jumping in on the coversation. I wanted to tell you that my H plays guitar. His hands have been good to play again. They were swollen like sausages but look normal now. He is only on MTX and because of a virus he has been off it 4 weeks so far(or about). He cant go back on it until the virus is gone, but he says that other then a tightness in his hands, he has not much pain. I thank God for that. What the problem is....is that the virus wont leave: Its a couphing thing that feels like a feather in his lungs. Had xrays twice and is showing nothing. Any ways...I just wanted to cheer you a little buy sharing about the guitar playing again. Have a good day if you can. mcjonval There is hope.

Dear Mcjonval

Thanks for that, I am off with flu this week and feel awful:eek: , so today I am going to get the guitar out and spend a few hours trying to play. I am getting frustrated at not getting better as quick as I thought I would, but my gp says flu takes longer than colds, and the arthritis has flared because of it so my body is having to fight two battles. Did your Husband find learning the guitar easy? I have been playing the piano for years and cannot believe how different it is and how hard, think itis going to be a struggle arthritis or not! How is your Husband today? Does he have psoriatic arthritis or rheumatoid?

Ronnie :) :wave:

`Hello
Sorry its been so long Ive been v unwell,more about that in a minute.
How are you feeling now do you still feel u have the flu, did you get the vaccine? I did but all it guarantees is I wont get really unwell with it but can still get milder strains of it.

Well since I spoke to you last a lots happened Ill start with the tooth, my gp took a look at the extraction site and told me go straight to the dentist and she said he could decide about the antibiotics and hed be able to see better how the abcess on my gum was and what was the thing in the socket that was causing me pain and leaving a horrible taste. He diagnosed a dry socket which happens to 1 in 20 patients then after exploring the socket he removed a big huge red blob that was covered in pus, it was an infected haematoma and as my jaw bone is slightly exposed, they said if I hadnt gone back to the dentist and just took more antibiotics that the infection would have spread to my jawbone, so Im getting it dressed every second day now by the dentist.

Then Friday, last friday my skin biopsy results were back and both skin biopsy's show that Ive another inflammatory disease called small cell vasculitis which has caused all the skin ulcers and they think its affecting my joints and my bowel and thats why Ive pain in my tummy before my bowel bleeds, I might need another biopsy of my bowel i also am due to have minor bowel surgery soon just they trying to get me stable before the next general anaesthetic.

At home and in our area most people have colds and flus and of course I caught a mild form of the flu which made me very weak and Id very high temp it was 39.2 at one point so I felt awful then by Sunday I was coughing and spluttering much worse and sunday night Id two asthma attacks, so I went to my GP today and ive sinusitis and a chest infection and an inflammed trachea so it means back on the nebuliser for awhile as I was so short of breath.

So my apologies for not getting back to you sooner
Its good to hear your sticking with the guitar, but do realise if its too much for your hands theres no shame in stopping everybody would and should understand.

Well its past 3am I woke myself up coughing and needed a nebs and since i was able to sit at the side of the bed and take my own nebs I said Id have a quick check to see how you are and to let you know im ok.

Ill check here tomorrow if Im ablw as id like to know how your getting on

Do you have any holiday plans? Or do you wait until the summer to decide.
Do you like the heat??
Speak soon
Chell xxx

Hello Chell,

You are certainly going through it at the moment aren't you? Makes me feel ashamed for feeling sorry for myself with flu! I have been pretty poorly too this week, hot, tired, lethargic, achy, low, coughing and spluttering and terrible headaches.

As for the guitar ..... gave it up! Sold it on e-bay at the weekend, lost out of course, but redeemed some money, went out on Sunday bought some wellies and welly socks to keep me warm whenthe cold spell gets here. Went out for two hours on sunday, and ended up in bed sunday afternoon. I am completely exhausted all the time. Don't know how long the flu will stay in my system but will be glad when it goes. Arthritis is bad probably because of the flu, and my stomach is awful as I have stepped up the leflunomide. Woke up last night, 3 in morning, spent an hour in the toilet...

Will they be able to stop this vasculitis that you have? Every two days to the dentist is very exausting for you, and would be a nightmare for me, not my favourite place!

Thinking of you. Hope you soon feel better. Can you get out at all? You must be getting very fed up.

Write soon,
Ronnie:wave:

Please stay on topic and limit general chatting in posts going forward.

Thank you