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Hip and Join pain and weekend while getting Nplate

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9 years 3 months ago #56169 by jinamom3
:( Not sure if any one can help or if this has already been discussed. If so, sorry for the duplication but I'm new to the site.

My mom is 88. She's had ITP for a few years now. Most recently her counts went down as low as 1.

Her story is very similar to many here.
She was given infusion therapy (Rituxan, prednisone and nothing worked for her. After a month of being in the hospital and multiple blood transfusions. They now put her on Nplate which has brought her platelets up and the doc is monitoring it. However, she is now experiencing major weakness in her hips she is finding it hard to get up.. doesn't sleep much.. has pain in every join of her body - Deep Deep pain..

If you have had similar issues with Nplate please share as to what she can do to ease the pain and get her strength back.

She is a strong and independent woman and is really down due to her inability to get around as well as the pain.

I have a call into Medicare to see if she can get a chair lift which will help.

Thanks in advance for your help or direction on this. I hate to see my mom suffer.

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  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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9 years 3 months ago #56176 by mrsb04
I had pain in my shoulders on Nplate and since coming off it have slept better

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  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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9 years 3 months ago #56185 by Hal9000
Do you suppose she is not sleeping because she is worried, or, is it the actual pain that is preventing sleep?

I dunno, I think I'd get on the phone with the doc, and get to the bottom of it, without delay if no one else has.

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9 years 3 months ago #56196 by tkine
I haven't been on Nplate, but I was on Pred, & had Rituxan treatments. I was 53 & had no hip pain before being dx w/ITP. I was hospitalized & had Pred & IVIG, & my hip pain started while in the hospital. It went away after a couple of months. But after having Rituxan treatments, it came back, along with other major joint pain, & has not went away a year later. For myself, I think it exacerbated a hip problem I had, but it hadn't made itself known until treatments. Other joint pain is a bit better, but not the hips. An MRI showed I had a tear in one hip, & tendonitis in the other. It's hard to sleep because each hip start hurting while sleeping on my sides, which leads to having to turn often to allievate pain. I hope your mother finds relief soon!

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9 years 3 months ago #56198 by Margaret k
Try sleeping with a pillow between or under you knees.

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9 years 3 months ago - 9 years 3 months ago #56199 by poseymint
I would talk to the doctor about switching to Promacta- another TPO drug. It is similar to Nplate in that it stimulates growth of more platelets, but very often has different or no side effects.

I personally have been on both drugs. They both worked for me to increase counts but they affected me very differently. Promacta is a pill taken daily, cheaper than Nplate. Most people have no problems with it.

Often if one TPO doesn't work or has intolerable side effects, the other will work better. good luck

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