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Polymyalgia Rheumatica (PMR) | Last Active: Apr 2 7:39am | Replies (12)
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For what it's worth, I've never felt much from the Actemra. I know it's working, because I've been able to taper down on the prednisone to 5 mg so far, but it's not like prednisone that makes you feel hyper, causes insomnia, etc. Early on I felt a little tired sometimes the day after the Actemra shots, but it was never very bad. Now I don't feel that anymore.
Replies to "For what it's worth, I've never felt much from the Actemra. I know it's working, because..."
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"Some patients will start to see improvement within a few weeks, but it may take several months to take full effect."
https://rheumatology.org/patients/sarilumab-kevzara
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oops ... same for Actemra
https://rheumatology.org/patients/tocilizumab-actemra
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I didn't suddenly feel better either. The way I knew Actemra "might be working" was because I could taper my prednisone dose lower.
As a general rule, my rheumatologist said I needed to give any biologic 3 months to know if it is going to work or not. I only tapered my prednisone dose by 1 mg per month for the first 3 months. I wasn't sure Actemra was working except for not having a flare during this time. After 3 months I decided to taper my prednisone dose by 1 mg per week. I felt the same until I started to "feel worse" when my prednisone dose was less than 5 mg.
My symptoms were NOT the same as a full blown PMR flare but I had some relatively minor muscle aches and pains. Overwhelming fatigue was my main problem along with dizzy spells and "black out" spells upon standing. Everything combined made my doctor suspect adrenal insufficiency. When my cortisol level was low, I was told to stay on 3 mg of Prednisone until things improved.
My adrenal function improved with time and eventually I was able to taper off prednisone a year after starting Actemra. I was on Prednisone for a total of 12 years to treat PMR so I had forgotten what it felt like to be off prednisone.
Now my rheumatologist asks me how long I have been OFF prednisone. I'm losing track but it is getting close to 5 years.