Hello fellow travelers. I was diagnosed with seronegative RA in late January. and was put on 15 mg of prednisone, which relieved the swelling and stiffness in my hands greatly. Then I started on hydroxychloroquine (200 twice daily) and tapered to just 5 of the prednisone.
I’ve been on this regimen for 9 weeks and feel better than before the diagnosis, but worse than when I was just on 15 mg of prednisone: stiff, swollen, tingly hands and wrists AND moderate stomach distress AND phantom pain in other joints AND just a general feeling of malaise—vague discomfort and unease.
Does anyone else suffer from malaise? Does anyone have stomach issues as a result of either hydroxychloroquine or prednisone? Is 9 weeks long enough to throw in the towel on hydroxy? I was SO hoping I wouldn’t have to go on methotrexate—I’m scared of it along with all the other DMARDS and biologicals. Help!
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Windonmyface
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Hello and welcome. This disease requires endless patience, everything is so slow. Apart from the pain and swelling that can flare up in minutes!
Prednisone is a bit of a devil drug, and yes it can make you feel marvellous but unless there’s no other option it really is not a good idea to stay on it long term. So try to put that behind you.
And hydroxy can take months to have full effect. Docs tend to want you to try things for 3 or 6 months to give it a proper chance to work, and for any side effects to wear off. And the malaise could be a side effect, or a sign of disease activity. You won’t really know until you’ve been off the prednisone for a couple of weeks.
But please don’t be scared of the other drugs..they have given me my life back and I wouldn’t be without them.
I think a feeling of not feeling quite right is fairly common for those of us with RA. I would ring your rheumatology helpline for advice about the meds... your tummy problems might well be down to one or other of those.
I also felt that I didn’t want’big meds’ like mtx but you have to weigh up the pros and cons. You do not want to get stuck on steroids... they do so much damage.
If hydroxy isn’t suitable or isn’t working then you do need something that is effective. There is evidence to suggest that hitting the disease hard in its early stages gives better outcomes long term. So don’t close your mind to other meds...ask lots of questions. xx
I am still working through on MTX which as positive sero RA however I know the drug does good stuff but I did suffer side effects BUT I still went back on it after 5 weeks off, as I could feel the difference on my joints. I also learnt to be careful of supplements that caused contras. Pred I hate and I was on 20mg dose whilst of MTX and hated every minute of it but also noted the higher I got on the dose the less effect I was getting anyway. I was diagnosed Sept/Oct. I was told 12-16weeks was a timeline to work too and 13weeks I could feel a difference in the joints and could see my blood works were showing decreased activity.
So I would say you need to learn what I am in which is PATIENCE. RA is a slow burner. I am learning every day what I can and cant do and also fatigue is huge part of my World as it is for many on here.
Getting your life back to some form of norm is a goal but you have to pepper it was a dose of realism about RA too. It can change you but you have to adapt.
Be positive about life and we all get days when we rant too!
Same as everyone else it is a long and slow slow time you will go through I have been diagnosed over 2 yrs now I am still not on right med s but 10 times better than I was life will never be the same but be positive never give up their are lots of people children worse off than us when I have a good day I make the most of it stay safe x keep your sprits up
It’s so true that lots of people are far worse off than I am! It’s encouraging to hear that you are 10 times better now than you were, even if things aren’t perfect.
Steroids are ok in the short term, but not long term and one or my gps at the practice calls them the devil drug.. I won't take them now and no matter how bad the pain i won't take them, why you ask , well for a start they piled the weight on me(though i was on them for years before i became aware of the damage they do) whereby i ended up having weight loss surgery and i went on to lose quite a bit of weight, but the end of 2018 my consultant put me on them during a period before going onto biologicals(another long story i won't bore you with) and what weight i had lost i put back on. They also messed with my head as well which didn't help. So it is on my records especially at the hospital not to give me steroids.xxxxxx
Man, steroids are definitely not for you! May I ask what strength you were taking when you had those problems? I wonder if even the small amount I’m taking (5 mg) is dangerous?
Maximem(spelling has deserted me this morning) at times 30mg and when i came off them 5mgs. Now i refuse to take them and if i do have to take them i won't take them for more than 7days. xxx
Hi - I agree with everything HH says in her reply. I'd add that if you do have to go on MTX please try not to worry too much. I was really against taking it - but it was the only drug offered to me and in the end I gave in. I did have some side effects initially but they wore off and it has really helped me. Like every other drug it does take time though - took about 14 weeks to start to work for me. I use the Metoject pens not the tablets. Hopefully, Hydroxy will help you over the coming weeks.
It’s encouraging to hear about your experience with MTX—I won’t be so alarmed if that’s the next step for me. And it’s also good to know that the wait time for these meds to take hold can be looong!
Yes I believe we have all suffered from the above. I have suffered with malaise and both my rheumatologist and myself said it was part of the disease. 4 weeks ago I noticed I was getting worse with tiredness and just not feeling right . ( lockdown made me monitor this as I couldn’t blame work or anything else so I could concentrate on me) and I noticed a pattern that methotrexate did give me a hangover effect but it was lasting 6 days and most days I barely moved or interacted. And unexplained joint pain Now off methotrexate and I’m no longer comatosed .I still have some joint issues but I’m in the land of the living.
Sorry about this long winded reply 🙄🙄 but my point is it could be the medication doesn’t suit you . Keep a diary so can explain everything to your rheumatologist.
Ugh, J1707, your experience with MTX is what I fear—glad you're off it. It’s good/not good to know that malaise is common with RA. I’m sitting here right now having “it”. I’m tired, have been busy all day, but don’t feel comfortable on the couch and can’t relax—nothing wrong with the couch—it’s vague discomfort in my back, shoulders, stomach, etc. etc. Thanks for your input.
Juts a quick reply, I haven't read any of the other posts.
Two things; for me a feeling of great debility and malaise was one of the first symptoms of RA, long before I was diagnosed....
Secondly, steroids can flood you with angst and unease.
It's a long journey, I'm afraid. Stay on top of your symptoms and write them all down. The more you can help the consultant with how you're feeling - a good overview is essential, the better they can help you.
Thanks very much for that. I think I too had been feeling “off” for several years before my RA finally manifested itself strongly in my hands, seemingly out of the blue in November. I hope I will be able to go off the prednisone soon.
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