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@abbeyc

At 3mg. How were you able to go “full stop” off steroids if your adrenals weren’t working?
Sorry. I’m a bit confused on how you handled this. The fatigue and any flares

Also do you need to take the biologic for life ?

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Replies to "At 3mg. How were you able to go “full stop” off steroids if your adrenals weren’t..."

Full stop and I stayed on 3 mg until my endocrinologist determined that "it might be safe to discontinue prednisone."

My cortisol level was low so I needed to stay on 3 mg until my cortisol level improved. My rheumatologist said I shouldn't attempt to taper my prednisone dose any lower than 3 mg until I was seen by an endocrinologist for a low cortisol level.

I'm off Prednisone but I might need to stay on the biologic for life. The biologic only got me off prednisone. My rheumatologist says I'm "better off" being on the biologic because of fewer side effects. I have to agree because I have no discernible side effects from the biologic I currently take. Prednisone caused me to have many additional problems from all the side effects.

I do a monthly infusion so my rheumatologist controls my dose of the biologic every month. I'm currently on the lowest recommended dose but I haven't been able to stop the biolgic. The longest I have gone between infusions was 7 weeks but my symptoms returned and my inflammation markers went back up.

Some people stop the biologic they take for PMR/GCA but I'm not one of those people ... yet. I have taken the biologic for 5 years for PMR. I was on prednisone for more than 12 years.

My rheumatologist doesn't think my autoimmune problems will ever go away because the immune system develops a "memory" for what it attacks. This is detrimental when my immune system is attacking me because my tissues will never go away like "foreign invaders" that the immune system attacks.

"Immunological memory also has its down side, which is a propensity to cause autoimmune disease. We have discussed autoimmunity in Chapter 13, but the contribution of memory cells has been given little emphasis. It is our opinion that without immune memory, there would be no autoimmune disease."
https://www.ncbi.nlm.nih.gov/books/NBK27087/
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I can't complain because the biologic works better than prednisone. I'm mostly symptom free except for arthritis. I have multiple autoimmune disorders that include both PMR and inflammatory arthritis.

My rheumatologist thinks it is important to stop autoimmune attacks quickly before an immune system memory forms. PMR is treated with long term Prednisone so PMR can persist for a long time in some cases. There weren't more effective treatment options for PMR until recently.