Hi, I was diagnosed with RA 8 months ago. I’ve been taking hydroxychloroquine and methotrexate and this has stopped the swelling I previously had in my knuckles, toes and knee.
However I now feel ill most of the time (I didnt previously, I just used to feel tired). I feel ill for weeks at a time, improve for a couple of weeks then go back to feeling ill again. No fever/temperature/swollen joints, I just feel like I’m ill and very tired. My rheumatologist said my blood tests were all fine.
Is it normal to fell ill the whole time with RA? Could it be the meds that are making me feel flu like? Or maybe they arent working and I need to switch to different medication? Or maybe this has nothing to do with RA and is a separate illness? If anyone has any help/experience on this I’d be grateful.
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Have you spoken to your GP about this as it may be something else causing you to feel ill ( you don’t say how it’s making you feel) if it’s ok and then comes back then is ok again I’d look for something other than meds being the cause as I wouldn’t expect side effects to go away and then come back etc when the meds are staying the same.
It’s a shock to the system when you are first diagnosed, especially when most people don’t understand what rheumatoid arthritis is and then suddenly you’ve got it. It’s enough to make you feel ill.
But do try not to dwell on it, and look around on this site & see how long some people take to get any relief…& be happ that Mtx & Hydroxy are working for you. So don,t think switching meds is the answer…8 months is not a long time in the RA world and those that keeps switching at the beginning seem to be the ones who take longest to find the real medication they need. So stick with it until your rheumatologist suggests something better maybe coming along for you.
There is light at the end of the tunnel……trouble is, it’s sometimes a blooming long tunnel!
I took hydroxychloroquine with Leflunomide. After a month I was tired of the cotton mouth and my hands getting numbness in my hands with burning pain. It was excruciating. The RA Dr said it was unlikely but once I stopped the hydroxychloroquinethat problem went away.
I have had a similar experience but mine comes with a sore throat. I get it on and off for weeks at a time sometimes. I feel like I'm getting a cold. I test for covid, nothing shows up. I just feel tired and run down. Then it goes away and I feel ok again. It probably isn't the same as you are experiencing but it's strange. I've had blood tests - all negative.
I'd recommend that you read up about fatigue on nras.org.uk/product/fatigue... also a great source of information and self management tools on the NRAS website. I believe it well worth your time to learn as much about RA as you can.
I don't have a problem with mtx probably because it's a low dose,plus I have a bio jab,tried hydroxychloroquine had all sorts of problems came of it and been fine,talk to your consultant or reumy nurse.
When i was first diagnosed 30 yrs ago when i was 21. I felt ill constantly. I was on alot of strong meds. (Sulphasalazine, Indocid, Co-Codamol, Steroids). I felt so ill. Plus i felt sick ALL THE TIME. It takes a while for your body fo get used to the treatment. Fatigue is part of the condition.
But don’t rush things, don’t be hard on yourself. When i was first diagnosed they said i was anaemic. Maybe your iron is on the lowish side, or u could be lacking in vit D. Why not see your gp? Maybe they could give you more blood tests. Good luck x
Hi Lovely,I am also pretty new to RA. Over a year. I am only on hydroxy and have not been given mtrxt yet. I do listen to my body and I must say I have exactly as you say. I have cough increasing and decreasing and it's strongly connected with fatigue and muscle soreness like flu. No fewer and I am not ill. I strongly believe this is inflammation going up and down in me. I do supplements as of curcumin juice every morning. It's complex but I try to put all suggestions of how to remove inflammation into action and mostly flue like symptoms are reducing and are bearable.
I got a lot worse on sulfasalazine, had to stop as I had a systemic adverse reaction, felt much better off it but still had the same old joint pains.
Then it was the turn of methotrexate. It seemed to work really well at first, I felt much better, it even kickstarted my thyroid gland again. Then I started feeling worse. Then I was getting stomach pain four days after the injection. I had to stop before the covid vax, and immediately my stomach pain stopped. And I started to feel better in myself. the old pain came back, but at least I wasn't feeling ill all the time.
So it is not impossible that it is the medication causing the problem and the only way to find out is to stop taking it for a while.
I'm 65 years old and was initially diagnosed with sjorgrens syndrome about 30 years ago and was on hydrochoroquine for 11 years. I experienced retina damage due to the hydro and went off. Year later diagnosed with RA. Started methotrexate 15 mg and then
Orencia. Two weeks ago got a viral and bacterial infection so methotrexate is stopped for now. Fingers have started swelling again. Hope to restart methotrexate in a few days. I have no tiredness. I generally work out few times a week. This helps with my energy levels.
I am on both I am more tired than pre meds but then I was in pain pre meds. Ask about your bloods I can see my results I am not in the anaemia range but it's on the lower side which is normal for me. I pace myself a bit better.
Well, RA itself can certainly make you feel like you have a bad dose of flu, are very tired and generally not in a good way. That was the first symptom that I had - and it came and went (mostly came) until the disease came under control with methotrexate. In my experience, the symptoms were closely correlated with my ESR blood test results. High ESR meant bad symptoms. The ESR (or CRP) measures general inflammation and should come down as the medication starts to work.How long have you been on them? It can easily take three to six months for methotrexate to really kick in.
However, it is not impossible that you are reacting badly to one of the medications. Ultimately, the only way to know would probably be to stop one of the medications for a period and see what happens. That carries the risk that the swelling and pain come back. Would seem best to only stop one at a time since the other may be doing a good job without adverse effects.
Obviously, you ought to discuss this with your doctor. It could be another problem entirely.
You are taking high dose folic acid along with the methotrexate? It is normally prescribed to combat side effects.
Thank you so much for all your feedback and suggestions. There are some really great ideas that I’m going to put into action!
I spoke to the rheumatology nurse yesterday and we’ve agreed I’ll skip my next dose of methotrexate to see if that’s the cause of my issues. If that makes no difference I will then stop hydroxychloroquine for a bit to see if that helps
I’ve also made an appointment with my GP and will ask them to do a full blood check. I’ll also ask whether I could have low iron levels, anaemia, low vitamin d, thyroid issues, or whether something else is causing this.
I’m also going to take on board doing what I can on the healthy eating front to reduce my inflammation levels and try to take it easy and get lots of rest. Fingers crossed I’ll get there in the end.
Thank you again to everyone who took the time to reply to me. I really appreciate you taking the time to help me
Hi, happily I've had no issues with my medication. My knees are slightly swollen but this is apparently 'ok' at the moment. Biggest problem with me is depression, living alone, no family now, not able to follow my usual interests or drive. Asked about an automatic car, 'NO' driving until after knees replaced.
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