Living with ITP

[Paulipants]

Strugging the eltrompobag side effects- hair loss, itching and pains in limbs and joints which affecting my mobility

[BeccaUnit]

I wish there was something I could offer you that could ease the pain. I suffer terribly when going through IVIG or Rotuxin infusions, and as many times as I have gone through it, little works to make the aching discomfort and bouts of low blood pressure better.

I do try to take "cooler" showers to combat the hair loss and take fish oil/krill supplements along with pre natal- trying to give my hair and joints as much nutrition as possible. Not sure if it works, but it's something that at least makes me feel like I am being proactive. I think the psychological comfort does help with getting me through the stress of treatment.

Please be careful, and if you ever feel lightheaded, call for help- take your blood pressure seriously!

Best wishes,

Becca

[Paulipants in reply to BeccaUnit]

Thanks.Good to know I am not alone.

[BeccaUnit in reply to Paulipants]

Your not! There are so many of us, all with different variations- giving you an opportunity to get many perspectives and experiences to draw from.

You got this! Always keep in mind you will get through it, sucky as it is, it does remission.

Best wishes,

Becca

[itplassne]

I'm sorry to hear you're suffering such unpleasant side effects. Can't you ask your haematologist to prescribe a different treatment? (I couldn't cope with eltrombopag side effects, but have no problems with romiplostim. ) I hope you get some relief soon 🙂

[Paulipants in reply to itplassne]

Thank you. I feel as though I have to give eltrompobag time . My haematologist tried so hard to get the funding for it . What side effects did you have?

[itplassne in reply to Paulipants]

I had really dreadful diarrhoea (every couple of hours, for several weeks, giving eltrombopag a fair trial) and felt literally as well as metaphorically drained! I don't understand why your haematologist can't prescribe an alternative, especially when you're having such nasty side effects. Surely the alternatives cost roughly similar amounts to eltrombopag...?

I gather that avatrombopag is now available for prescription in the UK, so perhaps s/he would prescribe that instead?

[Paulipants in reply to itplassne]

I will ask her at my next appointment if things haven’t improved. I had diarrhoea for the first week but then it went.