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If you have tapering problems below 5 mg this might explain why.
Polymyalgia Rheumatica (PMR) | Last Active: Sep 21 6:06pm | Replies (19)Comment receiving replies
oh my gosh. this is the most helpful comment I have read on any forum. I am 7 years on prednisone and really feel my PMR might be gone but every time I go lower than 2mg. I have pain everywhere. but it always feels slightly different than the original PMR. so I go to 1.5mg and suffer have stayed there 2 months before giving up and going back to 3mg. and dropping to 2mg. again and being fine. Have thought I might go on forever. Had one doc say that I had to get off and offered me sulfasalazine...which treats RA and Colitis. so I did not want it. what type of biologic did you take? thanks so much.
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There is no tapering strategy that has been researched that will allow you to taper off Prednisone successfully if your cortisol level is too low. If your doctor is thinking you might have RA and/or Colitis there are several biologics available to treat those conditions. Unfortunately, there aren't many biologics that are FDA approved for PMR. Only Kevzara is FDA approved to treat PMR.
At the time I was tried on a biologic 5 years ago there weren't any biologics that were FDA approved to treat PMR. My rheumatologist needed to seek approval for me to receive Actemra (tocilizumab). It was FDA approved for GCA but not PMR. My case was reviewed and the approval committee recommended that I be treated "as if I had GCA."
I actually have multiple autoimmune disorders. In my case, Actemra wasn't "optimal" for everything. I was able to try another biologic but it didn't seem to work for me as well as Actemra did. You need to try a biologic to know if it will work for you or not. It is still trial and error for the most part. My rheumatologist said he took an "educated guess" but didn't know Actemra would work for me before it was tried.
I have learned not listen to "internet experts" who said my doctors were ignorant. One self proclaimed internet expert said doctors in the USA were breaking the rules by treating patients with biologics.
I needed a consultation from an endocrinologist to finally be able to get off Prednisone because my cortisol level was simply too low. My endocrinolgist wasn't overly optimistic that I would ever be able to get off Prednisone because I was on Prednisone for 12 years.. The shocker was I didn't even need to taper my Prednisone dose from 3 mg to zero after my cortisol level improved. Don't try this on your own because it should only be done with medical supervision.
I was on Prednisone for 12 years so don't lose hope that you might be able to get off Prednisone eventually. I have now been free of Prednisone for close to 4 years. Actemra doesn't suppress my adrenal function and that has made a huge difference in how I feel.
Don't let anyone tell you Prednisone is the only or best option for treating PMR. My quality of life wasn't very good when I took Prednisone. Things have improved dramatically since I was able to discontinue Prednisone.