Worried sick

My mum has chronic lymphatic leukemia, she got chemotherapy for this, not long after when she was feeling okay she got itp, my mum is currently in hospital with a platelet count of 0, she has a black eye and bruising on her face and arms! After several attempts at treatments that have only worked short term they hav started her on revolade, her first pill was last night so I am hoping that this brings the count up. My mum is only 62 and is so worried about what is going to happen to her.

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  • Hi, I have also had Revolade, it was the only med that worked for me, no side effects either. It stimulates the bone marrow to make more platelets. I had to have 75mg to keep my platelets up around 60-80. When I first took it I went up to 150 on just 50mg, without Meds I had a count of 3.

    Unfortunately the bruising is going to happen with a low count.

    I wish your mother luck and try not to worry too much.

    Jason

  • I have had a count of 0 for my platelets. I found Mycophenolate worked for me. I wish your mother best wishes. It is a very frightening time but lots of us have come through to find something that works for us. I hope she is able to stabilise her count very soon. take care.

  • Be watchful, shortly after being put on revolade I got blood clots in my lungs liver and legs, I was put on blood thinners right away, I hope your mom has better luck..

    God Bless.....

  • You'll have to be brave... she will recover and be stable again soon... doctors can try some drugs and this drug she s started is a good one... there r some low n high moments with itp ... God help her

  • Thanks guys for the responses mum is now home platelets have risen to 3 which is not great but she has only had 3 nights of revolade so hopefully it continues to increase! My poor mums mouth is in agony, big black sores so she has some mouth wash to try and help them, she has to go back to hospital On Monday for a blood test so hopefully it's a good result!

  • We wish her a speedy recovery. It is very scary. Take care and we are all thinking of you. Keep us posted/ Nicky

  • Hi Laura

    Your mum is having a hard time just now... hopefully it'll improve soon.

    I'm on my second episode of ITP...

    My first episode... last year... I was treated with steriods... immune system suppressant and finally Eltrombopag (Revolade)... the Eltrombopag treatment boosted my platelet count and after only being on them for 2 months my count was back at normal levels.

    My second episode occurred January of this year... and my main long term treatment has been Eltrombopag alone... it's been a slow process... my platelets have been 50 to 60 for about 6 months.

    I have no underlying health issues... eltrombopag has and still works for me... I've had a few side effects but nothing serious that I can't work with.

    I wish you and your mum the best... x

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