Pain in muscles and joints: From time... - ITP Support Assoc...

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Pain in muscles and joints

Davy profile image
Davy
15 Replies

From time to time I hear about people with ITP, having pain in muscles and joints. I have also experienced it myself.

Do any of you know if there has been made any research that could explain the reason for this problem?

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Davy profile image
Davy
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15 Replies
ITP_1992 profile image
ITP_1992

I do but I've put it down to side effects of steroids rather than ITP.

jose1946 profile image
jose1946 in reply toITP_1992

I HAVE ALSO PUT IT DOWN AS SIDE EFFECTS OF STEROIDS, NOT ITP

eciardullo profile image
eciardullo

No explanation unfortunately but l feel your pain..l feel that because of this journey with prednisone l was also diagnosed with fibromyalgia...not taking much for it just trying to live with the chronic pain and the occasional tylenol to help me sleep...so good luck and may God be with you ....

Heath21 profile image
Heath21

I too thought it was a side effect of reducing steroids. However this time the pain was really agony and I have been diagnosed with polymyalgia rheumatica. The treatment for this is steroids! I refused to go high dose immediately and can control pain and sanity on7 mgs. It looks as if I shall be on this dose for a while and then gradually reduce. I am cheesed off as I have every side effect in the leaflet! Have now been on steroids this time for over a year. This, having asked consultant to put on my record that, should ITP recur, I shouldn't be put on steroids. Good luck!

Avantidave1988 profile image
Avantidave1988 in reply toHeath21

You have on steroid over year..I have been for 4 months now n facing so much insomnia . .was that side effect you faced ??

Heath21 profile image
Heath21 in reply toAvantidave1988

Yes on high dose I do not sleep, just lie and watch the clock every 10 mins. This time, I have been prescribed amytriptyline at night. For pain and sleep. Oh to turn the clock back two years and not be taking tablets!

Avantidave1988 profile image
Avantidave1988

I hope you are taking calcium supplement with vitamin d..It should provide little relief..I also m observing joint pain bearable for now n insomnia but I think its because of tapering and steroid long time exposure . .I wish this is just temperory . .

Fiddlersas profile image
Fiddlersas

I'm not on steroids because they stopped working, and I experience joint and muscle pain whenever my platelet count is below 20, which is most of the time. I find it painful to do stairs when I'm below 10. I assume it's because muscles micro-tear and bruise when they are used, and without platelets, they take longer to heal. Now I've had 5 shots of n-plate and have been getting very painful upper arm muscles - I can't put my weight on my arms. Apparently that's a side effect of the n-plate. Ho hum.

Darby17 profile image
Darby17

I, too find it hard to sleep at night. Now, I take a nap around one o'clock in the afternoon. Also, I seem to be tired most of the time. Are these symptoms from taking Rituxan ❓

Suntied profile image
Suntied in reply toDarby17

Yes I had such pain when taking it. Nplate helps numbers go up

ellaco profile image
ellaco

I am one of those annoying people who also has restless leg syndrome, I find the pain is worse and different when on steroids and my count is low

dede7 profile image
dede7

My platelets are not that low-110 normally but I do suffer from joint pain and inflammation regularly-another symptom I believe for me

Seafood profile image
Seafood

I just posted this, however I saw your post. I am on Promacta. 25mg first. I had awful joint and muscle pain. It got a little better, or I just got used to it. Then dr. took me to 1/2 pill after I got the flu and my count went to 226. Now it is 70, and still on 1/2 pill. one hour after I take the pill I am hurting all over, if I sit for any length of time it is hard to get up. I have worked out all my life, now I can only do a few days then a day of rest. I cannot take the sore muscles from the workout and the ITP or the promacta which ever is causing the pain.

Metalgod profile image
Metalgod

I do but have you had your uric acid levels tested as I did and had low levels so take a tablet for it and only now get aches if I eat certain foods like cheese

Metalgod profile image
Metalgod

I have been having pains in my shoulders and bicep muscles ever since I had a blood infusion about a month ago I been told it's a reaction to it and should settle down in time I haven't been on steroids for years and am on 50 mg a day of revolade for my itp but spoke to my specialist and she said as I am on a statin and a tablet for urlic acid it could be a combination of it all and sadly will come and go for the rest of my life whilst on these medications

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