Saying hello!

[DevonMaid1]

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

[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]

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.