I have long history of RA. Diagnosed seropositive in my twenties but thankfully after treatment was in remission for thirty years. Since my fifties I’ve had periods of flare and remission and for last ten years well controlled by low dose methotrexate. Post Covid I could no longer tolerate this. I am now on 200 gms filogitinib (even though I am 74) and 3mgs prednisone. Pain well enough controlled, though still stiff shoulders arms wrists etc. but I am experiencing extreme levels of exhaustion. I’ve been on the filogtinib (jyselica) for over a year and if anything the exhaustion is getting worse. Where I live waiting time for review with consultant is months. Has anyone else experienced exhaustion with jyselica or is it just my RA flaring again?
thanks very much for any thoughts.
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Porridge-
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I’m not on filogtinib but do have awful fatigue. I’m on 7.5mg of prednisolone, 15mg of mtx, a biologic, Cimzia, every 10 days, 5mg of folic acid 6 times a week, and cocodomol as a painkiller. It’s been 24 years since diagnosis and I’ve never been in remission. I mentioned my fatigue at my last rheumatologist appointment and she sent me for bloods to check my iron level. It turns out that I’m anaemic, not bad enough for an infusion, so I’m now on iron tablets, which are improving things
Definitely ask them to check your ferritin. I was complaining for a long time about my awful fatigue. My Rheumatologist did my ferritin, vitamin D and thyroid. Turned out my thyroid was underactive and my ferritin was 12!!! I think you have to be under 10 for an infusion on the NHS, so I had one done privately. Took about 3 months but I do feel much better now. The consultant who did my iron said the autoimmune antibodies hinder iron from being absorbed, and it also affects the thyroid. Not sure how true that all is, but I do feel so much less fatigued now. ☺️. I hope you get yours sorted, fatigue is horrible.
I’m not sure why they went straight for filgitinib rather than biological my GP thought I would be tried on biologic. Maybe they have to try low cost option first.
Hey Porridge! I’ve had RA since i was 21. (53 now). I have a 6 weekly infusion of Infliximab. Fatigue can be as frustrating as pain. I was told from the very beginning that fatigue would be a big part of the condition. Plus i was anaemic at the very start. Maybe you should have your iron checked. Maybe your Vitamin D is low. That can affect the whole body. Plus. I hate to say it. You’re 74. It could just be an age thing. Good luck in finding out. X
Thank you. Yes I do have to remember the age thing!! Frustrating because I was very active before this current flare/fatigue whatever it is. I appreciate people taking time to respond.
Hope i wasn’t rude in saying that! I was just wondering. As you said after Covid you seemed to get worse. I wondered if you had the covid jabs? Maybe they reacted with you. (I had them too). I’m not an anti-vaccer. Plus. I think it’s great that you’ve had an active life so far. Of course. They say swimming’s great for giving us energy & really gentle exercise.
I am glad you have got your blood tested for other reasons,as I am also on 200 mg filgotinib for just over a year,I am 80 next week,and down to 2 mg preds after 20 years on 10 to 5 mg,so am very happy with meds!I do find that if I have done a lot of gardening or housework etc one day,I I expect to feel tired the next day,and have been lucky enough to be able to sit and read or doze if needed.I am then o.k. next day.However,you have just made me think about the last year,and there have been a couple of occasions where I have felt exhausted but just put it down to old age!It does pass though,not carry on for long.I do take vitamin D3 and vitamin C daily,and try and eat healthily,but don’t do enough proper exercise,like walking etc.Should do better!I hope you get blood test results that solve it.keep us posted.x
Thank you very much for this very encouraging. I am definitely in flare just now so missing my exercise. I normally do yoga twice a week and walk a lot but just can’t just now will have to wait and see outcome of blood tests and next rheumatoid appointment - whenever that is!!
Yes, I have CFS/ME with my severe RA - they often go hand in hand. I often have to lay down after putting on lipstick, doing small tasks, taking small walks, or washing my hair. Just started LDN, by Rx (USA). Waiting to see if it helps (3 months trial).
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