Please help me? | Arthritis Information

 

Hi all,  I've been trying to control my RA of 10 years using diet/supps etc with limited success.  I'm not the sort of person who can tolerate drugs well, worst luck. My pain is worsening lately and I'm very worried as life is becoming unbearable.  I've tried MTX and sulphaslazine - both made me feel like dying due to the side effects so i gave up. Mostly i've lived on celebrex all this time, and now have an ulcer.   Recently i tried MTX again out of desperation and it really stuffed me up - my lungs hurt now.  I fear not being able to take any drug for RA and being sentenced to a life of hell.  Why are all the drugs so damned toxic and ghastly ???  I'm thinking i need some prednisone or something to control the pain right now.... does anyone think it will upset my gut further, with the ulcer and all ?  I feel so stuck !!! This stupid ulcer is making life hard on top of everything else, since the drugs only exacerbate it.  I'm due to get knee replacement surgery in the coming month, but don't want to be on DMARDs if i can help it.  It's scaring the hell out of me.  I know there's no answers to my problems, but i thought maybe someone might understand somehow.  It's a very lonely life with RA.  All the best, Leonie (Australia)Leonie,

I can't offer you any advice but feel that there must be a drug that you can tolerate, all be it, when you get rid of the ulcer.
I have not had these problems to date but maybe some of the other members have been in your boat and can offer some comforting solutions.

Sorry that you have ended up here being Christmas and all.
I don't know how to help you.. but I'm here for you...

Have a look at this thread, it might be of interest to you.
At least you can do some research.

http://www.arthritisinsight.com/forum/forum_posts.asp?TID=9762
Bodak2008-12-23 21:28:00hi, sorry for all your troubles. I kind of know how you feel.  Nothing is working very well for me either but it's not because of being sensitive to meds.  (I am to a certain point but not as bad as you describe)  I suppose my problems are just good old fashioned bad luck.  Bodak is right though.  There must be a med or med combo out there that will work out for you it just takes time to find it.  Maybe some prednisone is in your future, it's not that bad when taken in smaller doses for short time periods so don't be afraid of it.  Also know that most all of the side effects you may get will reverse once you're not on it anymore.Hi Leonie, helicobactor pylori is usually what they diagnose for ulcers and there is a 2 drug course of tablets that will help that. 

I am in pretty much the same boat as you, nothing really worked for me except Arava and MTX but we were always fiddling with the doses as the side effects were unbearable, I have been on pred for 9 years due to not being able to tolerate anything else, I have tried nearly all biologics, cannot tolerate them either.  So maybe you will have to do what I do and just be very flexible with the drugs.  My gp gives me MTX weekly and on the 6th week I usually get some sort of debilitating effect so we stop it for 2 weeks and restart, pred is usually stable at 10mg but it does not get me out of trouble, just helps me get out of bed, as one needs to be on the lowest dose possible.  Good luck, you may find a drug and bingo, it works - heres hoping.  If you need a pred pack have one to get you thru Christmas.  Hugs Janie. Yes, probiotics have been very helpful. Probiotics are never a bad thing. Other people have reported the easing of stomach problems with aloe vera juice. Leone, have you looked into antibiotic protocol at all? http://www.roadback.org/

It sounds like you're in a hard place. I hope you find something that works for you soon.Hi Leonie, Leonie, Leonie, A combination of Plaquenil and high-dose omega-3's (in the form of fish oil capsules) is working well for me.  I had stomach issues for a while when I started the plaquenil, but thankfully it went away.  I never had much luck with Celebrex.  Naproxen is my NSAID of choice.  Back when I was taking naproxen regularly, I also took Prevacid to help prevent stomach issues.  Luckily these days I only have to take it occasionally, and then it's for non-RA issues (the occasional headache; sprains and strains from stupid human tricks; and occasionally for Aunt Flo's monthly visit).

Prednisone can increase risk of serious problems if you already have an ulcer.  Have you been tested for h.pylori infection?  If that's the cause of the ulcer it's easily treatable.  Perhaps you should see a gastroenterologist if you haven't already.

Dang it, I knew I wanted to mention something!  I've recently had my fair share of "gut" problems as well.  I went through the whole batch of tests.  CT scans, xrays, labs, endoscopy, colonoscopy and in the end (no pun intended) it was a probiotic called Florastor that helped "fix" my troubles.  I use it with metamucil as a fiber supplement daily and am feeling a ton better.  The florastor also has another pleasant effect.  When taking antibiotics, you don't get diarrhea.  It's kind of expensive but I think it's well worth the cost. If heliobacter is the problem with your ulcer, another very natural way to treat it is with Manuka Honey.  It has been proven to help with  heliobacter ulcers. I have alot of trouble with medicine. I tried Arava, MTX, and Plaquinil. But i have been taking Chloroquine Phosphate 500 mg  for a month now and i am doing well on it. I feel better than i have felt in a long time. No real side effects to speak of. The ulcer should heal. You may need antibiotics for the ulcer. It is hard to keep trying new medicine when you have had all of these problems. I am allergic to many, many medicines. I didn't think i would be able to find one this quickly to work. Scince the past year didn't seem to give me much hope. The thing is this medicine is really working well for me. It's not making me sick. It's making me well. Be strong and keep trying. Don't give up so quickly. This disease can do damage to your joints and body. It can make you so tired you can't get out of bed. You need to get serious and get well. But try something different. Don't take something that makes you sick. Find something that agrees with you. Explain this to your doctor and they should help you. My doc says call if i have any problems and they will switch my meds in a minute. But as for now i am actually doing pretty well, finally.My rd says my ulcer is from prednisone so be careful.  Only thing that has helped me is biologics and pred. but I refuse to take it anymore.  My teeth were gorgeous and now I have teeth problems, dentist said due to pred. and my ulcer is due to pred.  I have not read alll the posts but if you can, I would consider a biologic.Leonie,
When I first took MTX, about 10 years ago, it made me a very very very sick person.   I thought the medecine was worse than the illness.   I had to stick with it because I had no option, and I learnt to manage the side effects...   nausea and mouth ulcers mainly.     After a while my body somehow learnt to cope with the MTX, probably about a year.     Folic acid helped hugely.   5mg daily except day of the MTX, which I still take after all that time.   Personally, I now feel grateful that a med like MTX exists, though at the time of the side effects my feelings were entirely different.
Hope it gets better soon for you.
Anna
Hope she comes back.....there is good info on this thread.
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