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myalgia from valcyte??

heapsreal

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hi all, been doing well on valcyte energy wise but i have been getting increasing muscle aches around shoulder blades and nech always stiff and sore. Strange symptom was that my shoulder blades get really stiff almost crapping as well has having problems picking my arms up, this after just going for a walk, no issues with legs etc. Anyone else get increased muscle pains when on valcyte? cheers!!!
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
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seems strange to be improving with valcyte but the type of muscle pain that im getting is new, im just guessing its valcyte, a quick google said 20 percent get muscle pains from valcyte, its abit more then just an ache, yes hoping with time it passes. I just havent read about other cfsers getting muscle pains from valcyte plus hard to tell as we all get muscle pains in varies degrees i guess. Just waking up very stiff and sore like an old man, maybe i am an old man??? How old is an old man??
 

SOC

Senior Member
Messages
7,849
Yerp, I had a bad stretch about 4-5 months into Valcyte treatment that included increased myalgia. I think it's thought to be a good sign -- that your immune system is starting to work better (or something like that). When the bad stretch was over, I felt a lot better than I had in years. So maybe you just need to stick it out for a couple of months.

Daughter, otoh, had no bad stretch with Valcyte and no increased symptoms, including myalgia.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Yerp, I had a bad stretch about 4-5 months into Valcyte treatment that included increased myalgia. I think it's thought to be a good sign -- that your immune system is starting to work better (or something like that). When the bad stretch was over, I felt a lot better than I had in years. So maybe you just need to stick it out for a couple of months.

Daughter, otoh, had no bad stretch with Valcyte and no increased symptoms, including myalgia.
thanks soc thats reassurring. Tramadol during the day and lyrica at night is helping me to tolerate the pain. I have been on curcumin for over a week now and it seems to have helped with the joint crunching in my neck like sand in my joints, so at this stage seems good for joint inflammation. Soc, how long did the muscle pains last while you on the valcyte?
 

SOC

Senior Member
Messages
7,849
thanks soc thats reassurring. Tramadol during the day and lyrica at night is helping me to tolerate the pain. I have been on curcumin for over a week now and it seems to have helped with the joint crunching in my neck like sand in my joints, so at this stage seems good for joint inflammation. Soc, how long did the muscle pains last while you on the valcyte?

I had a bad period of about 10 wks, I think. The worst part was about half that. It was like a bad crash -- flu-like symptoms, increased myalgia, extreme fatigue, plus a nasty (shingles?) rash. While I would have hated to try to work through it, it was not unbearable and the payoff was big, so I'd go through it again in a flash. There's thinking flying around in the ether (nothing documented ;)) that it could be an IRIS (immune reconstitution inflammatory syndrome)-type rxn like is seen in HIV patients after they start with HAART.
 

cfsme23

Senior Member
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129
Location
England
What made you guys good candidates for Valcyte, was it something in the testing that threw the drug up as a decent possibility?
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
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What made you guys good candidates for Valcyte, was it something in the testing that threw the drug up as a decent possibility?
herpes viruses make one a candidate for valcyte specifically cmv for me and hhv6 for others which valcyte has activity against.