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Has Prednisone/Actemra worked to completely heal GCA?
Polymyalgia Rheumatica (PMR) | Last Active: Jul 12 9:11am | Replies (12)Comment receiving replies
I had no idea you've been through so much!! And for so long. I'm so sorry.
I am very happy to hear you were finally able to be free of prednisone That stuff, while lifesaving, also wreaks havoc. So far so good with tapering, though I am insisting on slowing down tapering now that he just went down to 20 mg. She wanted to go to 15, I said 18, she said 17.5 and we settled on that (since we can split 5 mg pills.) Do you know if they make 1 mg of prednisone? So far we've had 20 mg, 10 mg and 5 mg pills. As we taper lower I'd like to have 1 mg if they have it. I'd rather it take just a little longer than having a relapse. She is assuring me he's able to taper more quickly with Actemra. Last time we tapered on PMR to 12.5 he developed GCA. I mentioned that and she said not to worry, he's got the thing and there's nothing more to get. My point is I don't want him to start having symptoms and have to start increasing prednisone again. That is my hope anyway.
I'm so glad you were able to get off the drugs for prednisone side-effects and the warfarin. It sounds like you are headed in the right direction. I'm so glad to hear Actemra is a good choice.
Replies to "@dadcue I had no idea you've been through so much!! And for so long. I'm so..."
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Yes ... there are 1 mg tablets of prednisone. I didn't need the 1 mg tablets for 10 years after PMR was diagnosed. I wasn't able to get much lower than 20 mg during that period of time.
You are doing well. I always say there isn't any best way to taper off Prednisone. There are too many other factors to consider when tapering off Prednisone. No two people are the same. Duration of Prednisone use and cumulative dose are important. However, relative to being on a moderately high dose for 10 years, you are doing okay ... I think.
If Actemra is working, a faster taper is possible though. In my case, after 12 years of prednisone use before Actemra was tried, there wasn't much of a rush. It took me about 9 months to get off Prednisone the first time I tried going from 10 mg to zero. My second attempt a year later only took 3 months going from 15 mg to zero.