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After remission ... has anyone discontinued Actemra or Kevzara?
Although I don't have any problems with Actemra for PMR ... I don't seem to be able to discontinue Actemra. I'm very happy to be off Prednisone for the last 3 years. As an added bonus, I was able to discontinue 3 blood pressure medications and Atorvastatin all of which were treating Prednisone side effects. A thirty pound weight loss might have helped me discontinue these medications.
Now I wonder if I will ever be able to discontinue Actemra. I seem to be heading in the wrong direction for stopping Actemra. I started with injections every two weeks 5 years ago. My injections were increased to weekly a year later.
For the last couple of years, I did an infusion every 4 weeks. The infusion interval was stretched to every 5 weeks but every 4 weeks was better. I tried a 7 week interval once but my ESR and CRP were both elevated after 7 weeks. Pain was slightly more but not like a flare. My rheumatologist said I need to stay on Actemra infusions every 4 weeks.
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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.
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1 ReactionThat is certainly something to consider since my rheumatologist wants me to try Actemra! I’ve tried all the other oral meds like methtrexate and leflunamide(?) but had to stop because of side effects. I really want to get off the prednisone so this is certainly worth a try. I only worry about my immune system, as I do get the occasional infection in my lungs.
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.
what we do know is that our bodies all react differently to different medications. Some have said MTX works others like yourself it didnt work. Same goes for all the biologics. We also know taking any drug will have side effects in most people. As Newton said "for every action is a reaction". I think keeping the PMR from restarting is the key while trying to taper. If one of the biologics helps with that then your doing the right thing. We also know nothing helps your cortisol restart. You still have to go slow and keep trying to stimulate your pituitary.
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1 ReactionI'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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1 ReactionYour relationship with Actemra has certainly been a complicated one!
But it did enable you to discontinue prednisone, and you felt better being off the prednisone!!
Im hoping to have similar results when I go on Actemra.
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2 ReactionsActemra has been so much better for me. My 12 years on prednisone were unpredictable to say the least. I never knew what would happen next.
Once I got off prednisone everything settled down. Not much happens anymore. Most everything has normalized except for residual prednisone side effects.
All I worry about is making sure I get to my next Actemra infusion which will now happen every 4 weeks again.