Saying hello! : Hi, I was diagnosed... - ITP Support Assoc...

ITP Support Association

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Saying hello!

DevonMaid1 profile image
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Hi, I was diagnosed 9 yrs ago but i went into remission really quickly (about 6 months) and nothing else since and bloods not checked regularly etc, the just before Christmas, bruising and fatigue led to me contacting my GP and they agreed I needed bloods done , platelet count came back as 24. Had a few weeks of prednisolone which initially worked but platelets dropped to 17. I must admit I hated these!! Now my haematologist has got me on romniploston. Seems to be working. After 5 weeks platelets 81.

Can I ask what side effects people have had? I’ve had some nausea, but mainly joint and muscle pain, particularly in shoulders. I now have also had a sudden drop in haemaglobin, anyone else had that? I am feeling a bit lost in all of this, it’s not come at a good time (husband terminally ill with bowel cancer) and I’m stressing about it.

Many thanks for reading

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DevonMaid1
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Sachmo16 profile image
Sachmo16

Hi - I started on Romiplostin in November and I too had awful pain and aches in my upper arms but no nausea - I do also have problems with sore joints in my hands and fingers anyway and take hydroxychloroquine for this - the pain in my upper arms was agony and I could barely lift my arms up without help at one stage and had to sleep on my back - It continued for 6 weeks or so - my consultant did not think it has anything to do with Romiplostin though which I found difficult to understand as it was a massive coincidence it started so soon after my first injection. At the start I was injecting every week but my platelets went up to over 500 - it was then reduced and I now inject every 3 weeks and platelets are good - I’m not sure but I think I was injecting to much and my body just reacted to it and a new drug and now everything has settled down and I’m finding it very easy and touch wood no more pain. It was worth sticking with it as I find injecting myself every 3 weeks much easier than my previous treatment with was 2 pills a day but if I had off continued with the pain etc I would definitely have come of it. Hope it settles down for you too.

Bowiemolly profile image
Bowiemolly

Have joint and muscle pain in neck, shoulders, ankles, feet. Had it any way due to years of riding. A massage once a month when allowed I find helps.No nausea. My dose increases on Tuesday let you know if any difference.

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