I went on a biologic Hyrimoz (adalimumab) 2 months ago and at first it worked extremely well and then I started to get bad pain and swelling in my hand and wrist and pain in my upper back which was also tight and locked and a different kind of pain in my lower back.
My doctor had told me to restart leflunomide as well and see if this helps. I am also on prednisolone and hyroxycholoroquine.
Has anyone else had a similar experience of a biologic drug working incredibly well for a couple of months (it initially reduced my pain from 9 to 2 (on a scale of one to 10) ) and then it stops working (my pain is now around 6) ? Is this normal?
I would really like to hear from anyone who has had a similar experience to find out what happened to them going forward.
The Doctor told me on the phone that often they swap biologics but won't do it now for several months due to coronavirus.
Many thanks to all of you.
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ma73jon
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Yes, I was initially taking Humira but it stopped working due probably to the development of auto antibodies. I then changed to Enbrel then Benepali and that then wasn’t doing enough so methotrexate was added in. Methotrexate is often added because it helps to prevent the development of autoantibodies and so keeps the medication working longer/better.
I was on imraldi for 5 months and it was excellent then bang overnight stopped working. They did bloods and levels were under half what they should be so clearly stopped working now on benepali for past 3 months and not really had any relief had to supplement with prednisone.
Oh boy Yes! Initially cimzia, that stopped working after 6 weeks, then, simponi, that stopped after 8 weeks, then rituximab- didn't work at all. Then orencia which was about 70% effective but I kept having the odd steroid injection over the 18 months I was on it. All the wasted time between appointments meant I was 6 years on from diagnosis with unremitting ra. My rheumatologist thought she could do better than 70% and I was getting very low (I was diagnosed with autoimmune hepatitis at the same time as ra so I can't have methotrexate). Then came tocilizumab WOW. I have never looked back. I work part time and until this lockdown walked miles, 2 Pilates classes a week. I'm 59 and feel great. It took tocilizumab 3 months to work so I was about 7 years until I got back to anything near normal. Don't give up. I'm sure there's one out there for you. Take care
Yes, a similar thing happened to me with benepali, it worked well for a number of weeks, then just stopped within a few days.
I'm now on baricitinib and suspect that it is now not working so effectively as it initially did. However I had a telephone call from the biologics consultant yesterday, who is changing me to tocilizumab despite the coronavirus lockdown.
Thank you so much to all of you for sharing this. It really is so useful to hear from you that you have had a similar experience at some point in your treatment. This forum is just so helpful.
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