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Thank you for all the info. I read a lot about PMR and you are well versed on this subject. So any info I receive is a blessing.
Just had a question for you. Since you have felt the symptoms coming back around 7 mgs more or less, have you been weaned on a monthly basis off the Prednisone? or Have you been weaned back over a 2 month period? I ask this question because when I was weaned from 10 mg to 7.5 mgs off the Prednisone I felt my symptoms returning (the same way I felt originally with my PMR). Then I missed one of my appointments for my monthly weaning and went back to the doctor after 7 weeks, my symptoms started to subside and I felt better (so I feel it may have been the Prednisone). Just something to think about. Not sure if this would apply to how your feeling, but thought it wouldn't hurt to let you know of my reaction with Prednisone. Thanks again for all your info!
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I was on prednisone for more than 12 years. I have been completely off prednisone for only the past 2 years. Four years ago, my rheumatologist wanted me to try a biologic medication called Actemra (tocilizumab) to treat "refractory PMR." I wasn't having any success with tapering my prednisone dose lower than 10 mg. My lowest dose was 7 mg but I couldn't tolerate that low of a dose for very long.
Actemra wasn't FDA approved for the treatment of PMR and still isn't. However, Actemra was FDA approved for the treatment of GCA. My rheumatologist wanted me to try Actemra because he believed it should work for PMR too. My rheumatologist made the case that Actemra might be my best chance of ever getting off prednisone. He got it approved for me with the recommendation to treat me as if I was diagnosed with GCA.
Actemra doesn't suppress my adrenal function like prednisone did. After Actemra was started, I tapered prednisone by 1 mg per month for the first 3 months. I felt reasonably well when I reached 7 mg.
I wasn't sure Actemra was working so I decided to put it to the test and started tapering by 1 mg per week. I wouldn't recommend tapering by 1 mg per week but that's what I did. I wasn't feeling well when I reached 3 mg. However I knew 3 mg was the dose I needed to be on in order to have my cortisol level checked.
My cortisol level was low so my rheumatologist wanted me to stay on 3 mg until I could be seen by an endocrinologist. It took about 4 months to get an appointment and I stayed on 3 mg the entire time.
The endocrinologist verified my low cortisol level but said she expected it to be low since I took prednisone for 12 years. She wasn't very optimistic that I would be able to get off prednisone. My symptoms were muscle and joint pain which was tolerable. The overwhelming fatigue I felt was barely tolerable.
My endocrinologist wanted me to stay on 3 mg of prednisone until my next follow-up visit 3 months later. Let's just say I stayed near 3 mg for another 3 months but I did some experimenting. I did some fast tapers down to zero which I called a 3mg-2mg-1mg-zero countdown taper over 4 days before going back to 3 mg. Depending on how I felt, I sometimes went back to 5 mg before going back to 3 mg. I don't recommend doing any of this either.
At my next endocrinology visit my cortisol was deemed to be "adequate" and that it "might be safe" to discontinue prednisone. I told my endocrinolgist about the countdown tapers I was doing. She said I could probably do that again and just stop prednisone instead of going back to 3 mg.. My endocrinolgist said I should take prednisone again "if I felt the need' but preferably she wanted me to tell her first if I ever needed prednisone again.
When I stopped prednisone the first time I was only off for about a week before I needed 60 mg again. My ophthalmologist started prednisone because of a massive flare of uveitis which can also cause blindness like GCA.
https://www.nei.nih.gov/learn-about-eye-health/eye-conditions-and-diseases/uveitis#:~:text=Uveitis%20is%20inflammation%20inside%20your,healthy%20tissue%20in%20your%20eyes.It took me another year to get off prednisone again the second time I tapered off. That was 2 years ago and I have been off prednisone ever since as long as I continue to take Actemra.
My goal now is to figure out how I can stop taking Actemra.
The following link contains information about Actemra. It comes from the company that makes Actemra so it may be biased.
https://www.actemra.com/gca/considerations/gca.html#:~:text=ACTEMRA%20changes%20the%20way%20your,can%20spread%20throughout%20the%20body.I'm probably biased because I feel so much better being off prednisone. It took a long time to get off prednisone but it was worth it. My cortisol level isn't a problem anymore.
My rheumatologist thinks I'm better off being on Actemra instead of prednisone. Actemra has risks too but so far I don't seem to have any major side effects from doing a monthly infusion of Actemra.