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If I choose to take no meds. What is the worst that can happen?
Polymyalgia Rheumatica (PMR) | Last Active: Sep 22 10:15am | Replies (23)Comment receiving replies
I've got the Kate Gilbert book, but I haven't read it in about a year. On page 40, she says "However, the difficult truth is that the consequences of not taking the steroids, for most people, carry more risks than taking them. To begin with, there is the risk that PMR, if left untreated, might develop into Giant Cell Arteritis, for those patients whose vascular system is also implicated in their PMR. Secondly, and just as serious, is the effect that the PMR has on daily life, and on the quality of life. Most people simply cannot manage daily life with PMR without the medication."
Since I had untreated PMR for about 7 months before I developed symptoms of GCA, I have wondered if I had been diagnosed earlier and started treatment, if that would have prevented GCA. But I have seen quite a few posts on this forum and on another forum where people with PMR develop GCA just as they are tapering to a low dose of prednisone. It seems like some people are just going to develop GCA regardless of whether or not they get treated for PMR. But the people who develop it after being treated for PMR have the advantages of already being connected with a medical team (rheumatologist, etc), and know the symptoms and risks of GCA. Hopefully that allows them to avoid the serious problems that can be caused by GCA.
As an aside, a few months ago Kate Gilbert posted in the PMRGCAuk forum asking people for a brief summary of their experience with Actemra. She said she was gathering information for a revision of her book. I replied to her request. I guess there's a chance my response will be included in the next version of her book.
Replies to "I've got the Kate Gilbert book, but I haven't read it in about a year. On..."
Thank you Jeff. Information is empowerment here where PMR is concerned. I appreciate your reaching out. I am well aware of the up to 20% crossover of GCA with a diagnosis of PMR and the reverse to a degree. I take it Actemra is working well for you.
Best.
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"The PMRGCAuk forum asked people for a brief summary of their experience with Actemra."
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If people on the PMRGCAuk forum wish to have information about Actemra they should read about the experiences people have on Mayo Connect.
I loved the PMRGCAuk forum but one ambassador didn't seem too thrilled that Actemra worked for my case of PMR back in 2019. I had to be very careful how I worded things about my experience with Actemra. I might have been overly excited that Actemra allowed me to stay off Prednisone for the first time in 12 years. I have been completely off Prednisone for nearly 5 years.
The advice was to take more Prednisone every time I had a flare but now I don't need Prednisone anymore and I don't have any flares. In my case, the "serious" side effects from Actemra didn't materialize compared to the "manageable" Prednisone side effects.
It got to the point where I would only post that "a biologic" helped me instead of saying Actemra helped. I was told Actemra wasn't pertinent to the UK back then. Even saying "a biologic" was counter to the narrative that prednisone was the "only option" for PMR.
I'm glad the PMRGCAuk forum is currently more interested in Actemra. Now they are actively seeking people's experience with Actemra. A survey was recently published in the hope that the UK would change their policy toward Actemra.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11079613/#:~:text=The%20number%20of%20respondents%20was,recapture%20GCA%20remission%20%5B4%5D.