Hi everyone... This is my frist post and probly not my last. 49 yr old male here. July 18th I was pre diagnosised with RA by my primary Dr. ( it was in my blood work) and he refered me to a rheumatologist - which I can't get into till October 22. Some of my symptoms are stiff neck, exstrem pain in shoulders, hands and feet and also both wrists. I'm very stiff in the morning and it takes awhile to get moving. I'm having all kinds of trouble getting dressed to go to work each day... pulling pants on, putting socks on tying shoes etc. I'm sure you all can relate. I also noticed I now have a bump- growth on top of my left hand, just above my wrist. Plus some of my fingers are starting to stiffen up. I wasn't like this 6 months ago... Can RA progress this fast ? And the pain... it's unbearable at times. And I have a very high thresshold for pain. My primary Dr. wouldn't give me anything for pain. He said the rheumy would do that. Now to my main question... What can I take other than ibuprofen and aleve - which I've been taking.And I've also been doing the creams. I can't take anything with acetamidophen in it due to liver issues. The nights are the worst. When I go to bed I can expect to wake up within 2 hours in extrem pain in my shoulders and hands. So I get up for awhile till it lessens some and try sleep again. And again the pain within 2hr's. Most days I've been going to work with only 2-4 hours of sleep. Which I know is very bad for me. I know this is just the start of my journey and I'm thinking it's going to be a very long and bumpy road too. I'm so glad I found this board ! Anyway... back to my questions... Does this sound like RA to you all ? Is there anything I can do for the pain until I get in to see my rheumy ? What drugs can I expect he will give me.
Please respond if only to say hi and I relate.
Bye for now... Davidzzz :confused:

Hi,

I do sympathise with you on your pain. I was first sent to my rheumatologist by my family dr. also. She diagnosed me with osteo arthr. She gave me light meds for pain, and for muscle relaxers, probably others too.

That was about 3 years ago. Now she diagnosed me with RA and I cannot take most of the RA meds, because I almost always have open sores. So, I just take stronger pain meds, more muscle relaxers, prednisone, and a very light RA med, that even pregnant ladies can have.

I know it is a long time to wait for a rheumy dr., but your 1st visit is your longest and there are not a lot of RA drs. - at least in my area.

I would think that your dr/family would give you something mild. The cold weather is the worse time. Of course, you should have some by then...

Good Luck to you, and more people, who are more informed will surely talk tomorrow.

Wannabe

:( Hi David,

Sorry to hear about your pain, and your wait to see the rheumatologist. I have psoriatic arthritis and it affects my neck, elbows, wrists, fingers, knees, ankles and toes. Every day is different, every day something hurts but not all of the joints at the same time. I have been on dmards (leflunomide, methtrexate etc and I am currently on steroids. I am 49 also.

It certainly sounds awful for you, and hopefully you will get something from your visit, but in the meantime can you get diclofenac? Can you take that? Some people cant, but I have it for pain and it is very good. The Dmards help to alleviate the arthritis getting worse but are not painkillers, you also need something to help the pain. Other people may have other ideas, everyones arthritis affects them in different ways and the drugs affect people in different ways.

The damp weather makes my arthritis worse, dont get cold, for example I sat in a friends garden on Friday night with others and didnt have the nerve to say can we go in, so I got frozen. Saturday and Sunday have been awful, all my joints are swollen and burning and I ache badly. I should have spoken up and asked everyone to go in, but I didnt want to be a nuisance.

Do not over do it, I have had to give up work as it was all (after 4 years of struggling) too much for me. I have children and grandchildren and sick mum and sick father in law, so working as well was just wearing me out.

If you have any other questions, this forum is excellent. Thinking of you. Hope you get sorted in October.

Ronnie :wave:

Thanks for the replies and support. :) I'm also worried about looseing my job. I work in a large retail store were it requires me to sometimes climb ladders and move product around. Luckly I'm in managment and can have others do this, but there are times I have to help. And it's getting harder to hide. No one at my work knows yet... I want to wait untill my official diagnosis and how much the meds were going to help me.

I went through the same thing...took 6 weeks to get an appt with the Rheum. Seemed like an eternity. I took every pain killer known to man. Nothing worked. The Rheum prescribed me prednisone. I was a different person that afternoon.
Hang in there...

Hi David,

It breaks my heart to read your post. I am a 28 year old female. I have RA, Fibromyalgia and Spondoloarthropathy. I was diagnosed at age 22.

I too had to wait for ages to get into my rheumatologist's office, but let me tell you, once I was there a weight had been lifted off me (psychologically speaking). I did not think, actually I couldn't foresee, my condition getting better. I wasn't even certain I had RA & Fibro & Spondyloarthropathy. My rheumatologist sent me for a bone scan, which is conpletely different to your average X-Ray. Well now - the proof was in the pudding! I was actually just happy to have someone who could diagnose me immediately after the first appt.

I am taking Prednisone, Folic Acid, Salazopyrin (sulpher pills at 500mg per pop!) and I was taking Vioxx, then Bextra, which were both taken off the market. My rheumy prescribed Durogesic patches @ 0.25mg to be worn for three days (they're Opiates but NOT mood-altering), then replaced and Methotrexate. They are horrendously expensive but one cannot put a price on one's day-to-day living and health & happiness... even functuality for that case! I used to wake up incredibly stiff, and yes, nights were worse too. Bearing in mind that I have lived with this for six years, my fiance fully supports me financially and emotionally. I HAD to resign from a job I loved last year as I was never sure how bad the days would be. Some were pretty tolerable, others were nightmares (there were no in-betweeners). The latter is what drove me to resign. Additionally, I started developing migraines AT LEAST once a week. I have been hospitalised many times as a result of the migraine attacks. Due to these migraineous attacks I was literally sick, with my head in the toilet bowl (sorry for that graphic picture!) for at least 24 hours if I was lucky. It has been a nightmare of mammoth proportions, but the best thing for you is to hold tight until you see your rheumatologist.

I know that's not what you want to hear as I felt the exact same way, but it is worth it. Your peripherals seem to be WAY out of control (hands, wrists, knees, ankles etc.). What got me through those weeks before I saw my rheumatologist for the first time was...paracetamol and codeine. Nothing else came close. I am now awaiting a new drug called Lyrica, perhaps ask your rheumatologist about it when you see him/her.

Another bugger is that I was only 22 years old, and I don't know how long I had RA for before I saw my rheumy. I'm 28 and desperate to make something out of my life, but for the time being it is NOT going to happen. Cold and/or damp weather is a big no-no. I know exactly how you feel. I never wanted to be a party-pooper but your health is so much more important. You will be doing more damage to yourself by staying outside or even out when you're feeling pain. I know this is NOT a solution, but take it from a once-vivacious young lady that you need to rest. Get as much rest as possible. I had the exact same problem as you have, I'd wake up two hours after I went to bed. I fully understand what you're going through, but please have faith in that the more you push yourself, the worse it becomes. At least I was able to finish my university degree, fat lot of good it's helping me! Please, try to take it easy. Also, please let me know what's happening. I'm at home and I'd love to be here for you.

I'm thinking of you, and you are NOT alone! ;)

Gen

Thanks Jane...

Thanks Gen for your words of encouragement. It really does help to know that others understand and have been here - were I am at now.
I'm trying my best to get rest, but it's really hard to with the hours I work. - I work 10 hours a day, 5 days a week. And it takes me an hour to get there and an hour to get home. Now add in getting ready and eatting.... Some days are even rougher, when I have to close the store then turn around and open it the next morning. Like last night - got out of there at 10pm, got home at 11pm, in bed by 12. I needed to be up by 6am, but I woke up at 3. And now... here I sit, 5am writing this. But you know what ? It feels good to write about it. As tired as I am, it feels good because, I know there are others out there who have been there, and know what I'm going through.
I thought about self medicating and ordering some pain med's from one of those flaky online med places, but then thought better of it. You never know what you might get.
Yes, I'm hang in there... it tough, but I'm doing it.
36 more days to go till my rheumy appt. ( Oct. 22 )

Hi David, I am sorry you're going through all that and know how frustrating it is to have to wait so long to see the rheumy. I don't know much about RA, but I do know it can progress quickly in some people. And if it's more severe, there are stronger prescription meds out there that help keep it under control. If you are looking for an over the counter med to try while waiting to see the rheumy, you've already tried the most common & availble ones (aleve & Ibuprofen). Not sure if aspirin would do anything; other than these, there is one other over the counter anti-inflammatory I know of called Orudis (Ketoprofen). It's usually in green packaging. Howeever, ive noticed at least in my area, it is very hard to find anymore. If you can find it, its another option, though if you have worsening RA, it's doubtful any of these meds would help. Not sure if this will help either, but you might try some moist heating pads over your most painful areas.

yes prednisone is an "instant miracle cure". The only problem is it isn't intended for long term use as far as I know. Plus it can add the pounds on if you don't really watch what you eat. I sure wish it were.

David I am keeping you in my thoughts. My ilnesses went diagnosed for quite some time. I know what it's like to have to wait months for a specialist appt. Please just remember that you are not alone.

Is there any way someone else can open and/or close the shop for you? Sometimes I'd drive to work at 4a.m. and try to fill as much in as possible, in nine hours. Trying to be alert was a bit of an obstacle when I'd have to sit through meetings, and use my laptop too (my brain is full of porrige and my wrists hurt like hell when I'm tapping away for extended periods).

So yeah I understand when you say you're working ten hours a day, as I did, then to come home and cook dinner/do the laundry/whatever (!) and run a household is a challenge unto it's own. There are many reasons as to why I left my job. I worked for an investment and IT firm, in the marketing dept., but some days I just couldn't function. Once your rheumy has put you on the right course of treatment suited to both your body and your environment, yu should see a noticable difference. I wish I had a board like this seven or eight years ago, but I learnt through trial and error.

Please keep me updated. I wish you the very best, and please believe me when I sy there IS hope out there.

May you have a pleasant start to your week (under the circumstances!).

Thinking of you,

Gen :)

yes prednisone is an "instant miracle cure". The only problem is it isn't intended for long term use as far as I know. Plus it can add the pounds on if you don't really watch what you eat. I sure wish it were.

So true!I;m now down to 10mg per day, which is awesome after taking 20mg for many years, then 15mg etc. I also had cortisone injections but to my rheumy's dismay, they only lasted for about three to six days! After two years of cortisone injections at three month intervals, I said "ENOUGH!!!" and he agreed. We live and learn, but the Prednisone thing is a source of concern to me. I don't know how long you've been on it roses4evver but many years have passed. Are you on Pur-Bloka, if I may ask? My last "heavy duty pain medication" was Celebrex. Well that bombed too! The Durogesic opiate patches are a DREAM, and there is a plaster (sort of 5x10cm) called Capsiplast - completely natural. It's Mexican Chilli seed. Those patches were great for moments of extreme pain. Just a thought, look up Capsiplast and you can cut it to your preffered size. Please excuse the spelling erors, it's 05h00 in South Africa and I have not managed any sleep since Saturday.

You're in my thoughts. :angel:

Love Gen

Thanks again you all... for all your support and knowledge. I really appreacheate it.
I'm googling and writing down all the med's you all are talking about so I can talk to my Dr. about them. The patch seems heavy duty stuff. And shots in my joints ? ...:( And a pill to make ya FAT ? Nope I don't think so. lol :) - A little humor. Seriously... I think I would try anything that helps at this point.
I know about Orudis KT (keteprofen). I used it a long time ago for something, I don't remember what, but as I recall it was pretty good. I also emember that it was hard to find here too. Maybe I'll try it again.

Bye for now my friends... :)

Gen79

No, I'm not on pur-bloka (don't know what it is).
She has me on Enbrel & Arava for the Rheumatoid. Real bad things happened with being on the Enbrel in April this year. It's very highly sun sensitive on a 60 degree cloudy day & I was even using 40 sunblock. I was plant flowers for about 5 hrs. 6 hrs later I had bumps & a bad rash all over the sun exposed parts of my arms & neck & itched to high heaven. Later I was told that that could have been life threatening for me had than been a a little warmer day. So I went off it for the summer & suffered emmencely.

I have only been on Prednisone 4-5 times and only 4-6 wks at a time in the last 18 mo. My Rheumatologist wouldn't allow me to be on it longer than that & only at high flare times. Don't know if it's because of my age or what. (I'm 46) This is what I meant about watching your weight on it. When I took it, gosh it was WONDERFUL to not be in so much pain, like heaven itself. I would be good the first few weeks then boy did my apetite start increasing & the pounds came on! I'm learning so much from you all.

Hi all ! Well I got to see my rheumy yesterday. I had asked them to put me on their cancelation list, so if anyone cancels I could get in. It's a last minute kind of thing... they just call you and ask you if you can come in. They called me at work at 9am and asked if I could come in at 3pm. Of course I said yes. ( For all of you all who are waiting for a long time to get into see a rheumy - call them and ask them if you can get on their cancelation list. )

I feel the exam went very well. I was in there over an hour. He couldn't tell me what kind of arthritis I have yet ( suspects RA ) he needs more tests for that. I asked for something stronger than aleve for pain and he gave me perscscription strenth Ketoprofen 75mg twice a day. He said he didn't want to start me on any of the arthritis med's until my tests came back. He also said he had to be very careful of what he gave me because of my liver issue. So... he sent me to get more blood work done and to get exrays of all my problem areas. I had 45 exrays taken !! They took them of my hands, feet, elbows, sholders, wrists, and knees. I go back next week the 28th to talk about the test results and the course of action we're going to take.

Bye for now...:)

Wow! OMG, I wonder if you hold the record around here for most amount of
x-ray's! Well, at least your doc seems to be very thorough in all the testing he's sent you for. I really do hope that a reason is found somewhere for your pain, maybe in all the blood tests.

My rheumy used to always take me in right away when I called in alot of pain...either that same day or the next day. I just have to sit there & wait awhile until he squeezed me in between some people. Though all of a sudden the last time I had to wait 3 weeks to get in, even on the cancellation list.

I hope the new med helps you somewhat & gives you some pain relief and I wish you luck in finding the source of your pain.

Hey all...
Well tomorrow is the big day - after all those x-rays and blood work. I guess my Dr. will tell me what kind of arthritis I have and get me on some med's. I'm really nervous about this... I don't know why, but I am.
Also, the Ketoprofen - 75mg twice daily, doesn't really help much. A couple of times I took it 3 times a day and that seemed to help some, but not much. I'm also nervous about asking for stronger pain med's. I don't want him to think I'm a druggie or just want to get high. In the past I have noticed that I have a high tolorance for pain med's and need something stronger. Should I tell my Dr. this ? I also have a high threshold for pain. So when I complain about pain - it's usually severe. Should I also tell him this ? Any suggestions ? I'll let you all know the out come of my visit tomorrow.
Bye for now...

Hi all...:)
Well I went to my rheumy Appt. on Friday the 28th. And he said "yep you have RA" What a relief ! - Not that I have RA, but that I have the diagnosis. It's like a weight being lifted off my shoulders being able to finally know whats wrong with me, to cause all this pain. I'm sure some of you know what I'm talking about.:)
So... here's the med's he put me on... Humira - self injections - every other week. Hydroxychloroquine 200mg - take 2 once a day. Prednisone 5mg once a day - after I finish the intro pack. ( He said he was only going to have me on Prednisone until the Humira and Hydroxychloroquine kicks in. Which he says in about 2 months. ) And he wants me to stay on the Ketoprofen 75mg - 2 times a day.
Does all this sound about right to you all ? I told him I really didn't want to take the Prednisone, because I didn't want to gain a lot of weight, but he said not to worry, just eat more carrot sticks and less buttered popcorn and pizza and I'd be fine. He said it wasn't the drug that make you gain weight. It's what you eat. It makes you more hungry. He also said to watch my salt intake.
It's amazing what those drugs have done for me in just 2 days ! Almost no pain. And I was even able to finally sleep for more than 2 hours last night. I got 6 hours ! Now I know this is probly just temporary and that these drugs will probly stop working for me after awhile, but for now it feels good. Compaired to the way I was... anything is better.
Have any of you had any experience with any of these med's ? If so I'd like to hear your comments. Or for that matter any comments on anything I've had to say. :) That's why I'm writing here... to share with others and to get feedback.
Bye for now...

Hi, yes I know all too well what a relief it is to finally have a diagnosis for something. I got diagnosed with my spine problems right away after having an MRI. But I still have other inflammatory issues and joint pains, etc that I thought were diagnosed, but now it seems not. Lupus was suspected for me about 18 yrs ago due to facial rash & the dermatologist asked all sorts of other questions like other symptoms I might have been having, which I was. He suspected lupus, but I couldnt really follow up due to no health insurance. So over the years I've had flare ups of joint pains, swelling, rashes, visual problems, headaches, hives, angiodaema, muscle pains, major fatigue, etc..
In 2004 I finally got health insurance thru a job and finally saw a rheumy for the first time. He gave me Bextra first , but a few weeks later it was taken off the market. And of course the Bextra was working pretty good. He had me try Mobic & relafen (both of which cause my eyes to swell shut), then I went down fast. I got so bad he finally put me on Prednisone. I took 40mg per day for about 1 or 2 months, then tapered off slowly over 8 months. I tell you this Prednisone is like a miracle drug, I hadnt felt that good in years! Every symptom disappeared, including in areas I didnt realize were bothering me. I did gain some weight, which was mostly bloat and moon face...but I was able to exercise again so I guess that helped to keep me from gaining too much. He also had me start Plaquenil (200mg twice per day) at the same time. Plaquenil takes many months to build up in your system so the doc gave this at the same time so that it would be built up enough when the steroids were stopped. So I've been on the same dose of Plaquenil for several years now without any side effects or anything. It seemed to keep my flares more under control...either they were less severe or didnt last as long. Sorry I do not have any experience with Humira but Im sure others will post about that.

One strange thing...I didnt gain too much weight from the oral prednisone, but I did gain alot (and massive moon face) from all the spinal epidural steroid injections i've had. But then again I had developed severe spine problems so therefore could not exercise at all. I also had one ankle act up on me again. However, I did watch what I ate (I seem to completely lose my appetite while on any steroids)..so I ate even less than before and that did not prevent me from gaining steroid weight and bloat. The good thing is, the steroid weight will gradually come off once the med is stopped. For me it takes a while (5 to 6 months) but at least it does go away.

Again, I'm really happy that you are being treated & that the treatments are working for you. I hope it stays that way and you are able to get back to a more normal life!

:) Thanks for the comment Baybreeze.

Hi Davidzzz
Am very pleased that things seem to be getting sorted out for you, it is so very hard to come to terms with having RA as things that we could all do once seem so difficult such as bathing, dressing, driving etc. I have only recently been dx but have joined a few societies where you can discuss with others about drugs/support etc they have used which really helps you to make decisions as to what to do. It's a nice way of meeting others as you find there are people who live near you who are in the same boat and can possibly meet up! In england you are offered the old style drugs first such as MTX etc before you can try the newish ones such as humira, i guess that's the NHS system for ya, all comes down to budgets etc.!Good luck and keep us posted of your progress.
wenXXX.

Hello baybreeze
My doctor has decided that plaquinel and steroids are the drug to try for me, unfortunately i have now have amoon face and have put on about a stone so far, think it would help if i could exercise but due to pain am unable to at present. I havent actually started the plaquinel as yet as am a bit concerned of side effects, but think im am just going to have to get on with it as all drugs have side effects! Althouhg i have been dx with RA i am awaiting an appointment at a hospital in london which specialises in auto immune diseases, as they think i might actually have lupus! It's reassuring though to hear that you are doing well on plaquinel. Keep us informed of your progress.
wenXXX.

Hello, message for Wen,

I have read your threads and wanted to talk to you as you live in England. I live in England as well and appreciate the NHS very much when reading how people in other countries have to cope with getting drugs etc.. I have been on all the DMARDS, sulph, mtx and leflunomide and am now on daily dose oral steroids. You mentioned that you were on steroids and plaquenil, I havent heard of plaquenil or been offered it, do you feel its working well? I have been trying to get the anti tnf drugs - humira or remicaide but when I was assessed my arthritis was quiet and only a few joints were hurting and didnt qualify for it!! I am back to rheumatologist in November to see where I go from here. I have psoriatic arthritis and have had it for 4 years, I have now had to give up work and a times use a wheelchair if my toes ankles and knees hurt too much. Are you still working? You mentioned meeting up with other sufferers do you know a website that informs of these organisations?

Regards and best wishes,
Ronnie

Hi Ronnie
Your right, although we pay contributions to the NHS atleast we have access to medical services as oppose to waiting till we can afford them! Im from East Anglia. Due to trying for a baby i havent actually started the plaquinel as yet but just take the steroids but the RA is getting worse so i know i will have to start the DMARDS soon! Another name for plaquinel is hydrochloquin, you've probably heard it called that. You could join arthritiscare and NRAS (National rheumatoid arthritis society) and ARC which are the main arthritis organisations. You soon realise that there are many people who probably live near you who are facing similar problems as your self. One thing i've learnt from other experienced sufferers' is that you have to be heard to get things done, so do keep going back to consultant until you are happy with drug/treatment. Am now not working, unable to drive most days, some times difficult to dress, bath etc..so am trying to rest at home as flares dont seem to be calming down really. What part of England are you from? Takecare.
wenXXX.

Hi Wen,

Thanks for your reply. Having bad day today, swelling up and aching, flare on its way. I also live in East Anglia, Bedfordshire. I have been very lucky with my hospital treatment and my doctor is brilliant so wouldnt want to move away. Hopefully soon have something other than steroids. Do you have hot flushes on the steroids?

Ronnie

I am so alone with my health problems. Really. There is no one out there that have the problems I have caused by what caused mine and like mine. There are no support for any of mine. I wish even for just the osteoarthristis as minor and major as it was I could find one person to talk to.

Thank you all for all the comments... keep them coming. It's good to talk about it.
As for me ? I'm doing o.k. Some of my pain is coming back due to ( I think ) the lower doses of Prednisone I'm now taken. My first six days of it came in a blister pack. You take 6 the first day, 5 the next, 4 the next and so on until you get to one a day. and thats were I'm at now. After the 4 a day is when the pain came back. My Dr. also has me on Plaquenil ( Hydroxychloroquine ) 400mg once a day. I've also only have had one shot of Humira so far. ( I didn't like giving myself the shot ! :( ) The next shot I have to give myself is Oct. 12 - it's every two weeks. Also taken Ketoprofen 75mg twice a day for pain. So folks I'm just going day by day and waiting to see if all this works. I don't go back to see my rheumey until Nov 28th. Oh yea... for got to add that I'm not really having any side effects from any of the drugs except a couple of times some light headedness and some pounding in the heart, that went away shortly after it started.
Bye for now you all... Try and stay positive - it helps...

Hello Davidzzzz
Humira has received very positive reviews, some call it the wonder cure! Goodluck and best wishes, keep us posted of progress.

Hello Becauseofhim
Try not to feel so sad and lonely as you always have people on here that are listening and chatting to you. Am sure your doctor could help and there must be local/national organisations with in your own country/town to help with specific illnesses or even counselling services. Takecare.

Hello Ronnnie
Sorry to hear you've had bad day, every day something on me is swollen or unuseable, that's the joy of having RA (great isnt it)! Im from Suffolk, was in Bedforshire a while ago as went to Whipsnade animal park, a very nice place. Do consider joining the organisations i mentioned as they really are very good and have all the latest up to date info on all types of arthritis. Am looking in to trying to have use of a hydropool as this is ment to really help with pain and overall well being, plus it enables you to meet others who are in similar situation as yourself. Do you attend anything like this?
wenXXX.
wenXXX.

Please do not add your own concerns to be discussed on someone else's thread. Start your own new post.