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Old 07-10-2006, 04:21 AM   #1
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katmell HB User
Lightbulb Re: psoriatic arthritis

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) 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. 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 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.

 
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Old 07-12-2006, 12:38 PM   #2
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Question Re: psoriatic arthritis

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?

 
Old 07-14-2006, 03:02 AM   #3
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katmell HB User
Re: psoriatic arthritis

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.

 
Old 07-15-2006, 07:58 PM   #4
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Re: psoriatic arthritis

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. 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

 
Old 07-20-2006, 03:39 AM   #5
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Smile Re: psoriatic arthritis

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.

 
Old 07-20-2006, 10:48 PM   #6
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Re: psoriatic arthritis

Hi Survivor. 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. 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: USA

 
Old 07-21-2006, 02:12 AM   #7
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Re: psoriatic arthritis

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! 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

 
Old 07-21-2006, 04:13 AM   #8
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katmell HB User
Thumbs up Re: psoriatic arthritis

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

Last edited by katmell; 07-21-2006 at 04:17 AM.

 
Old 07-21-2006, 02:17 PM   #9
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mcjonval HB User
Re: psoriatic arthritis

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. Talk to you soon, mcjonval Ps.survivor, I am still waiting to hear from you Survivor.

 
Old 07-22-2006, 09:45 AM   #10
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WannaBeFreeToRoam HB UserWannaBeFreeToRoam HB UserWannaBeFreeToRoam HB User
Re: psoriatic arthritis

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

 
Old 07-24-2006, 03:27 AM   #11
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Re: psoriatic arthritis

Hi McJovnal

Hope you got my message OK. I am new to message boards so hope I am doing it right! 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!

 
Old 07-24-2006, 09:15 PM   #12
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Smile Re: psoriatic arthritis

Hi, Survivor! 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

 
Old 07-25-2006, 01:15 AM   #13
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Re: psoriatic arthritis

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!

 
Old 07-25-2006, 01:22 AM   #14
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Re: psoriatic arthritis

Hi again McJonval

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!

 
Old 07-25-2006, 08:13 PM   #15
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Smile Re: psoriatic arthritis

Hi Survivor. 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. 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!. 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. 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. 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

 
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