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After remission ... has anyone discontinued Actemra or Kevzara?
Polymyalgia Rheumatica (PMR) | Last Active: Jun 21 11:32am | Replies (7)Comment receiving replies
I guess that question has me wondering. I have thought all along that the biologics were to just help with PMR type flares and treat inflammation. Thus allowing you to taper off prednisone. At that point you could discontinue biologics. It never occurred to me that biologics might be something that would be difficult to get past. Is this the reason for your difficulty due to increased PMR markers or something else entirely? I know your body has a long history of challenges.
Replies to "I guess that question has me wondering. I have thought all along that the biologics were..."
I'm not sure what to think after more than 5 years of Actemra. My inflammation markers have been "negligible" on Actemra. I'm used to seeing lab results that said the following:
ESR --- Under 1 mm/hr
CRP --- Under 3.0 mg/L
My last CRP after 7 weeks between Actemra infusions showed a minor elevation but it was flagged as high. I'm not sure what to make of this change. According to the chart in the following link my CRP wasn't high enough to suspect active autoimmune disease.
https://redcliffelabs.com/myhealth/lab-test/crp-normal-range-how-much-crp-level-is-dangerous-c-reactive-protein-level-chart/
Before Actemra was tried my CRP was always in the 20-50 range even when I took prednisone. After Actemra was started, I once asked my rheumatologist if my inflammation markers were too low.
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My main concern was that extending the time between Actemra infusions didn't go so well. I can't say my pain was suddenly worse but it was getting gradually worse. I was aware of more shoulder pain than usual but nothing to complain about. I didn't even mention the pain to my rheumatologist. However, my rheumatologist said I "looked worse" and told me to take some Prednisone if I needed it.
One time I was off Actemra for 6 months because of supply chain problems during the Covid era. That wasn't a good experience either. My rheumatologist said there was a "marked deterioration" that time. I needed some Prednisone to tide me over until Actemra supplies improved.
After 2 years on Actemra, I asked my rheumatologist when I might be able to stop Actemra. He didn't think I would be able to stop Actemra anytime soon. The reason he gave was because of "immune system memory." He said my immune system has been attacking me for a very long time. The immune system remembers what it attacks and it wasn't likely my immune system would forget anytime soon.
"Over the past decade, it has come to light that immunological memory can exist in the context of autoimmunity as well. It represents a “constant-remembrance” of self-antigen that may account for the persistence of autoimmune attack."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4067599/#:~:text=Over%20the%20past%20decade%2C%20it,major%20contributor%20to%20autoimmune%20pathogenicity.
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I never thought that it might be a problem getting off a biologic medication either.
I think it’s still worth a try, for me, anyway.