I’ve had RA for 12years, so far I’ve tried 4 biologics, 3 did nothing and 1 made me sick. I’ve had 3 other drugs, one gave me liver problems the next gave me white blood cell problems and the third I’ve been on for around 3years, leflunomide combining prednisone, im aware Im in need of something stronger. Hence I’ve accumulated a lot of damage and now have severely damaged knees and right hand because of this. Surgeon will give me a full knee replacement this year but I’m high risk due to being unmanaged on meds.
Has anybody else had these problems with medication?
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Darkrose58
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Hi - don’t give up something will shine through for you. I am currently on the biologic not convinced it working to be honest..not giving up hope though. All the best. Hessie
I think your rheumatologist needs to help you lots more. Sounds a bit like mine.I have tried 3 biologics too which didn't even start to worknow. Have you tried hydroxychlorine.
I am on my 5th biologic and my body does not like many of the DMARD group (just 200mg hydroxy is all it will tolerate). Have you looked at which group of cells the biologics you have tried have targeted. I thought Enbrel was my saviour but lasted for 7 years. After many changes with a really hard period of 2-3 years when nothing worked (enough) currently on Abatacept which has been great for me although WBC and Neut often run low but has not caused me any issues.
I’ve been on Abatacept for over a year and it seems to be working fine. It was fairly quick acting too. The only downside was that my vertigenous migraines returned after bein in long term remission from them. I now inject Abatacept once every two to three weeks after discussion with my rheumatologist.
Hi. Do you also take methotrexate? I am on various drugs and i have been on Abatecept for 10 months now but really want to come of methotrexate although i have been told that you cannot take one without the other by one consultant and another said you can so a bit confused.
I’m not sure what the last one targeted, tocilizumab, it was the only biologic that I responded to, unfortunately in a bad way as well as good, I lasted 5 weeks, although my Rheumy is still keen for me to continued? I think Abatacept was the next to one to try?
Yes I have. I’m on my 6th biologic. They’ve either worked for a few months then stopped, not worked at all and one of them I couldn’t tolerate. I’m on 4 DMARDS now but even that’s not enough. Steroids have given me steroid induced diabetes so I’m in a bit of a pickle with meds. It’s very hard going, to suffer every day with pain, to have your hopes raise and dashed time after time and the funding issue hanging over your head all the time whether they’ll give you another one. I can offer nothing other than you’re not alone in this.
Hello, I have tried 2 biologics, the first one had no effect on the RA, the second one I was on for around 8 months. I felt terribly unwell but couldn't figure out what was wrong. After a little while the doctors thought it might be reaction to the drug so it was stopped, it then took a further 8/9 months for the symptoms to die down and I felt a bit better. As a result I don't want to take anything stronger. I am now on methotrexate, sulphasalazine and hydroxychloroquine
My joints have become quite badly affected. I have had knuckle replacements, elbow replacement and jaw replacement, I am now waiting for knee replacements. The surgeons have been wonderful and they have eventually given me a great deal of relief. None of them have said that I am high risk . I hope you can find some relief. Take care
Hi there, have you tried a functional doctor to consider the root cause of the disease? My understanding with autoimmunity is it can be triggered (and further flare ups can come from) various factors ranging from dietary, to environmental etc. For example, I was diagnosed a couple months ago and have found out that my body is having an immune response to soy and I've been working to remove this from everything I come in contact with (not just eating) and actually find it REALLY helping. A functional doctor can work with you to find out what your immune system is responding to. Some great starting points in terms of reading are Phoenix Helix and Sarah Ballantyne (if you haven't done so already). Hope that helps, and good luck to you Xx
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