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How hard is it to get on Actemra (Tocilizumab) with PMR?
Polymyalgia Rheumatica (PMR) | Last Active: Apr 2, 2023 | Replies (51)Comment receiving replies
I have just returned from a Rheumatology visit with my doctor. He is recommending Kevzara because I have been unable to reduce my Prednisone dosage and seem to tamper and need to increase my dosage again due to pain. This has been occurring for the past 8.5 months. My daily pain is static at about 6.5 after my morning Prednisone and I am having to take pain relievers to get enough relief to move around more freely. I also have Degenerative Disc Disease and Fibromyalgia in addition to PMR so I am definitely looking for better control of my daily pain. I’m not sure if Kevzara will be approved because of the costs but I am praying that if it will help me they will approve it. My doctor indicates that he has several patients who are taking it for rheumatoid and they have been able to successfully get off of prednisone. That is my prayer! Thanks for the discussion thread and I will let you know if I make it through the approval process. I completed all the blood work and chest x-ray this morning so fingers crossed. Blessings!
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You might want to remind your doctor about the risk of a bowel perforation while on Actemra if you have ever had diverticulitis. I think bowel irritation is a common problem when people take prednisone. When they switch to Actemra, something happens to increase the risk of a perforated bowel.
I haven't had that problem ... thank God. I knew someone who did have a bowel perforation who ended up having an adrenal crisis. She wasn't taking Actemra so she said it was prednisone that caused the bowel perforation. Secondary adrenal insufficiency was definitely caused by her long term prednisone use. It was hard to blame anything else for the adrenal crisis.
When you taper down to 7 mg of prednisone or in that range +/- that is when the symptoms of adrenal insufficiency start to show up. People really seem to struggle at that dose of prednisone when they try to taper off. Adrenal insufficiency makes it very difficult to go much lower than 7 mg unless you taper extremely slow. That is why we are told to taper off prednisone slowly in the first place. The adrenal problem gets worse the longer we take prednisone.