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Anyone tried Actemra (Tocilizumab) to treat PMR? FDA approved for GCA
Polymyalgia Rheumatica (PMR) | Last Active: May 21 8:50pm | Replies (107)Comment receiving replies
<p>I’m a 5year veteran. Tapered myself off Prednisone x 2. I’ve never had complete relief but could do some normal activities like shop, go out to dinner. I’ve gone significantly downhill since I won’t go back on prednisone. The list is too long, why. I walk with a cane and need a W/C for appts. Take ibuprofen every 6 hours in order to just walk around the house. I tried Kevzara, 4 months, with no result. Began Actrema after that. I’ve had 2<br />doses. Nothing yet. I miss my life, once very active. This continues to take away. I’m interested in the cortisol level that’s mentioned frequently. I understand the physiology behind it… I’ve never had a level taken. My rheumatologist said I can’t get one while on this med, results would be affected. I find most answers unsatisfactory re: cortisol, adrenal insufficiency, and blood levels as diagnostic tools for this disease. My levels are all within normal limits.(5 years!) leads me to believe that one story about this disease is put forth and when you don’t fit in those parameters no one has answers. Yes I believe I have PMR. I never had the miraculous relief others have experienced from prednisone<br />And now these biologics are not performing either. Thanks for reading. Just when I feel I’ve accepted my lot, out pops my desire for just half of my normal life back.</p>
Replies to "I’m a 5year veteran. Tapered myself off Prednisone x 2. I’ve never had complete relief but..."
Hello @mahernm, happy Veteran's Day as of tomorrow (November 11th, 2023).
You may notice, I moved your discussion and combined it with an existing discussion titled: "Actemra (tocilizumab) to treat PMR?" - https://connect.mayoclinic.org/discussion/actemra-tocilizumab-to-treat-pmr/.
I did this so you could meet other members talking about actemra and PMR. @ @dadcue, @dontknowitall53, @marid57, and @normank have all shared their experiences with actemra or their questions regarding starting actemra and may be able to share some updates and insights with you.
@mahernm, you mentioned you have had two doses but have not noticed any results yet. Did your provider discuss when you may notice results if there were any?
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If Kevzara didn't work then I doubt Actemra will work but it might be worth a try. My rheumatologist said if Actemra didn't work, he would try a different biologic like Humira (TNF inhibitor).
If you are off prednisone, you can have a cortisol level done. The simplest test is a basal a.m cortisol level usually done between 8 a.m and 9 a.m.
https://pubmed.ncbi.nlm.nih.gov/23906493/
This lab test is a relatively good screen for adrenal insufficiency. If you are on prednisone then the test isn't useful until you can maintain a very low dose of less 3 mg.
As a 5 year veteran of PMR and long term prednisone use, your likelihood of adrenal insufficiency is rather high.
https://www.endocrine-abstracts.org/ea/0056/ea0056p44
An endocrinologist can be helpful. If your cortisol level is low, the treatment is either hydrocortisone (the drug form of cortisol) or prednisone (a synthetic corticosteroid).
Whether you have PMR or adrenal insufficiency or a combination of both --- you will probably need some prednisone.