Been on Imraldi for 17 months & the drug improved my mobility & stopped joint pain but didn’t stop severe Fatique. Generally it has given me a better quality of life & for that I am really grateful, until now.
Friday in the early hours I started with the bone grinding wrist & hand pain. Had to search the house for my old supports & in conjunction with ibruprofen gel coped the best I could.
Saturday, feet were tingling & keeping me awake & when I went to get ready with hubby for dog walk, struggled to get my feet into my trusty skecher boots. This morning, after a bad night stayed in bed & began to wonder if the biosimilars were stopping working & I was in a nasty flare.
Has anyone else had this? Did it right itself, as a temporary blip or did you have to come off them altogether? Or were you offered a different biologic? Problem is I really don’t want to ring the Rheumy team in case I have to go to see them as I’m worried about covid.
I also don’t want to go back to 2019 when I sincerely thought I would lose my mobility at one point. All info would be appreciated xxx
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Juliachoo
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Sorry Julia, I’ve never taken a biosimilar .. I’m on an original biologic, but I’d phone the helpline and not let this get out of hand as you don’t want to be in pain and it sounds like some RA inflammation is certainly breaking through, but could it be a flare? Your inflammation levels in your bloods and a look at your joints would tell the rheumy of course. Ask if you can show them your joints via FT etc (but you’d have to go somewhere for your bloods doing. You may be like me though and go to your GP nurse for them.) Speak to your rheumy nurse ASAP and then decide between you how to do this. Good luck and let us know how it goes. It could be a flare which rights itself and could be your med is still working. The blood results would tell you that more. x
Hi Julia, Benepali stopped working for me. I felt I was improving whilst taking it, then suddenly one day I felt quite ill again and all the old problems came back. I'm now on my 4th biologic and feel I'm making an improvement.
It might be best to contact your rheumatology dept.
Thank you for your reply! I think benepali is the Embrel biosimilar isn’t it? Like Imraldi is the Humira biosimilar. I’m hoping it will right itself but if not I’ll have to ring the Rheumy nurse. Xx
Have you maybe overdone it, physically or stress? Maybe it's a severe flair up. I would contact your care team asap in any case. I hope you find a solution soon.
Definitely contact your team. They may well be able to help without seeing you; mine have helped me a lot remotely.Even when I have seen them f2f, I've felt very safe and have also been having regular blood tests with no issues or concerns.
Hi Juliachoo...that sounds tough. I have a non steroidal anti inflammatory called Meloxican to take with a PPI (omeprazole) if and when I get pains, though have never had them as bad as yours sound. much stronger then Ibobrufen. Ask for a script maybe. I gather best taken for say 3 days rather than just the once. I am on Tocilizumab & Methotrexate
Sometime when you are feeling better... I am interested to hear about your 'tingly' feet...I have had these for many years and have always been told nothing to do with RA which I developed 5 yrs ago.
Rather think you're right as not a painful thing but have always wondered..have hammerhead toes, slightly wondered if on the Raynauds spectrum as we are auto immune . both my feet the same though and guess if just one foot not RA...a curiosity then !
After a miraculous improvement when I first took Imraldi, after I had to miss a few doses because of an infection, when I went back on it, it stopped working completely. Rheumy changed my biologic to Cimzia and added methotrexate. Although it is not as good as the Imraldi was when it was working, am grateful for any relief. Keep going - sure that there is a medication that will work for you.
I always wonder whether it's the progression of the disease, or as you say the meds becoming less effective.
I don't know if there is a way to tell the difference. Either way though the advice is the same. if it's less effective or not holding back your disease I'd contact your rheumy team.
Thank you everyone for your input. I have been very anxious as was told a mutual friend had died of covid a few weeks ago. She had RA & was on Rituximab infusions twice yearly. My friend says her husband is adamant she completely shielded except for her 8 weekly bloods & her infusions at the hospital! This has completely “freaked me out” as I have to go every 4 weeks for bloods due to low platelets! She was 65 & had RA since she was 40. Plus we had such a lot of personal tragedies last year.. I have cancelled eye test, dental check up & may cancel my next blood tests as just too worried about going out... xxx
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