Introduce

Hi all,

I'm a 41 year old who has had chronic ITP for 23 years, with periods of remission, mainly when I was pregnant.

Initially treated with prednisolone for 6 years roughly, then had my spleen removed, no joy with that one!!

Tried rituximub but had a allergic reaction to that! After that, went on to romisplostim which worked for a couple of years but the last couple of months my count started yoyoing between 20 and 700 within a week...

The last 2 weeks, I started on lowest dose of eltrombopag. After 5 days of taking it my count rose to over 1400 and a week later still rising even though stopped taking. Potassium levels also rose very high.

Consultant waiting for count to drop to decide where we go from here.

Has anyone else had similar experience with this?

Thanks

Wend

4 Replies

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  • Hi

    I've had ITP since February 2015. Steriods didn't work for me and I had a bad reaction to the one immune system suppressant my consultant tried.

    I've been on Eltrombopag... last year my count went up in about 6 weeks of taking the drug. I stopped taking it after reducing the dose and my platelet count held it's own and then started to increase at the end of last year.

    I had another episode of ITP at the start of this year... on the main my treatment has been Eltrombopag. My count was sitting around the 50 mark... then it started increasing... however... it's also a few nose dives too. I've been on a reduced dose for the last two weeks.. checkup on Friday to see what the result is.

    I've not had my spleen removed... so Im not in exactly the same position as you.

    My consultant is never concerned with my numbers... and I've stopped worrying about the fluctuations too...

    I've just read back my response... I don't think I've been much help... 😄

    Pauline x

  • Hi, Elthrombopag works for me too as well. But since it's very costly, I will take it during periods only. a week before periods date. I will be betweek 0-15k counts always but for me heavy bruising is the only problem and now I have become immune for it, they come and go. If you also doesn't have any other problem, you can take that when required. I have heard, continuously taking Elthrombopag might also result in becoming Immune for that same like Steroids and other ITP medicines.

  • Hi ITPAffecty when you take 4 or 5 day elthrombopagelthrombopag, how much high your count?

  • MMF is another option to stabilise counts and particularly its jumps. We had someone on the forum who I think was successful