← Return to Shifting from Prednisone to Hydroxychloroquine

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@jabrown0407

When I received my first PMR diagnosis I refused steroids long term at any level due to many, many complications. The doctor immediately gave me an Rx for hydroxychloroquine. I did a lot of research and ultimately declined that drug as well. I am chemically sensitive to drugs and am known to not tolerate some drugs well at all.

I researched the common side effects as well as the less common ones, the type of drug, anti-malaria, and the nature of how it accomplishes this task. Another factor I always consider is the half-life of the drug. This is the amount of time it takes your body to eliminate half of the drug you take on day one. Hydroxychloroquine has a half-life if a minimum of 30 days. Most doctors believe it takes 5 to 6 half-lives to completely eliminate the drug from your body - that calculates out to 6 months. A side effect can continue during the half-life cycles. I also consider the reason for usage, pain management vs. curative.

Treatments options are very personal. I would never advise someone to take any drug or not to take it. I would help them with research. Being in pain and wanting the pain to stop can be a very compelling argument to take any drug. I wish you success on your journey, unfortunately we all have to work thru so many decisions while dealing with pain and limitations. Hope this helps you.

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Replies to "When I received my first PMR diagnosis I refused steroids long term at any level due..."

In reply to @jabrown0407 "When I received my first PMR diagnosis I refused steroids long term at any level due..." + (show)
jabrown, I hear you. I am also extremely med sensitive and do not want to even smell prednisone. I also do my research and am not happy with what I've seen re: Actemra, hydrox, Kevzara, Methotrexate, etc. I did see some research on the effectiveness of Doxyclycine, but I don't recall that the outcome was encouraging or I would have already engaged my rheum.
I started with symptoms in Jan and thought it was due to over-exertion of the thighs.
Right now, I await an ultrasound for April 30.....5 weeks. I am going to call the rheum tomorrow since she didn't even suggest testing my markers during this timespan, so I will have to do that myself.
May I ask what you've decided to take medication - wise, if anything? I'd be ever so interested in what you're doing for pain and mobility. I am concerned about inflammation and what, besides certain foods, can irritate or exacerbate it! Exercise? I can't find any good information about this *or* if just untreated inflammation from PMR can actually damage your heart, organs, etc.
Wondering if a researcher like yourself has found anything. I want to ask my doc but I have a feeling since she'll prob be pushing pred, she'll say yes. Plus, since I have untreated osteo, she's already told me, I have to have infusions at the same time as pred. No, I won't be around for that. At 75, youthful, but understanding that I've lived a loooong time, I wouldn't do that to my body and mine. Yea and kudos to all those who do. As you said, we're all different.
A million thanks for any feedback. And, of course, my best to you.