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Promacta and muscle pain?

  • karenr
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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6 years 2 months ago #67008 by karenr
Promacta and muscle pain? was created by karenr
I know one of the possible side-effects of Promacta is muscle pain. Has any of you Promacta users suffered from this? If so, where and how long? I've developed pains in my upper arms--below my shoulders--that don't seem to be connected to my swimming or other activities.
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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6 years 2 months ago #67026 by Hal9000
Replied by Hal9000 on topic Promacta and muscle pain?
Karen, I have upper arm pain too. But it started long before I was diagnosed with ITP. I've never mentioned it to a doctor because the pain is inconsistent, comes and goes, and not that bad. I finally spent some time trying to figure out what it might be. The best I could come up with was 'Polymyositis'. Here is the Wiki article on it.
en.wikipedia.org/wiki/Polymyositis
For me, this is the part most relevant.
"
... Sometimes the weakness presents itself as ... an inability to raise one's arms above one's head.
"
Does that describe what you are experiencing?
ITP Types and Treatments by HAL
  • karenr
  • Topic Author
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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6 years 2 months ago #67028 by karenr
Replied by karenr on topic Promacta and muscle pain?
Thanks, Hal, for responding. I can move my arms fine--most of the pain, ironically, comes when I try to sleep on my side--either side. Sometimes during the day I have serious pain there too--and then it disappears. I'm swimming a little less now as my arms do start to bother me after I do so many laps. I've not noticed, on this forum, that anyone has complained of Promacta-caused muscle pain.
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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6 years 2 months ago - 6 years 2 months ago #67038 by Hal9000
Replied by Hal9000 on topic Promacta and muscle pain?
Yes. Sleeping on my side seems to make it worse. LOL, that was the tip I was going to follow up post back to you. But then, sleeping on ones back can be a problem in terms of 'sleep apnea'. Also, stretching seems to help.

I think, in that quote, what they were trying to say is raising one's arms causes pain - which is very odd in an anatomical sense.

On a side note. Since I've started taking Danazol all arm muscle pain has gone away. I suspect if I stop taking it, the pain will eventually come back. On Wiki it talks about how steroids are a first line treatment for Polymyositis.
ITP Types and Treatments by HAL
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6 years 2 months ago #67120 by Sinfoniarc
Replied by Sinfoniarc on topic Promacta and muscle pain?
I have not experienced any muscle pain, but DID experience both dry eye and dry mouth. Ultimately, Promacta didn't work for me, much to my frustration.
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