Is eltrombopag available in UK yet? Also what are side effects please .

[poppy5]

[brandy29]

HI : I HAVE BEEN ON IT FOR ABOUT11/2 YEARS, AND HAVEN`T HAD ANY SIDE EFFECTS. God Bless You.

[Lindylou86 in reply to brandy29]

Eltrombopag is available in the uk my daughter has been on eltrombopag and MMF since December 2012 and there doesn't seem to be any side effects, we recently tried to reduce the dose and her platelets started falling but once the dose was upped dosage again they have started to climb.

[Mesh in reply to Lindylou86]

Hi, Can I ask how old your daughter is? my daughter has just turned 6 and we live in Hampshire. She has had ITP for 2.5 yrs. Her count has always been around 10 or below. I read that Eltrombopag helps maintain counts much higher than my daughters, therefore I don't know if we could try it with counts starting so low?? tried steroids some time ago but they didn't work, since then no other treatments. She doesn't really bleed, mainly awful bruising & petechai are her symptoms.

[Lindylou86 in reply to Mesh]

Hi my daughter is 23 and developed ITP last April when her count went and stayed down for a long while below 5, all the usual treatments were tried but she remained very low. She has never been a bleeder (except on one occasion when she needed balloons inserted in to her nose to stem the bleeding) only ever having the very bad bruising and petechia, she suffered an intercranial haemorrhage in October after her count had been at 0 for a while. treatments were then re-tried with no affect. When she was put on her combination of eltrombopag 75mg and MMf 1gm it was like a miracle, her count has steadily increased she was at one point up to 250 and she is able to lead a very normal life. It was decided to stem off the eltrombopag to 50mg but her count slowly dropped over a three week period it got to 103, she has since gone back on to 75mg but if count gets too high then we will have to look at stemming off once more as obviously between devil and deep blue sea in that you dont want it to be too low but neither do you want it too high. We have been very very lucky as her haematologist has been absolutely brilliant and without him she wouldn't be here he has been very supportive. Good luck with you daughters treatment its really worthwhile researching treatments and speaking to your haematologist. Take care.

[dp1204 in reply to Lindylou86]

Hi! Glad to hear your daughter is doing better. I've had itp for the past 15 yrs but it just started crashing like 4 yrs ago. I've been thinking about taking eltrombopag but I'm scared of the side effect that it can mess up your liver and I really don't want to take something everyday forever. Well I saw you mention MMF? Can I please ask what is that? Thanks

[Lindylou86 in reply to dp1204]

MMF is the short name for Mycophenolate, my daughter is on a combination of eltrombopag and mycophenolate. I remember doing a lot of research when she was ill and previous posts had mentioned Dr Drew Proven who is based at Barts and Royal London Hospital, he is a leading expert in ITP. When conventional treatments were having no effect I asked her haematologist to contact Dr Proven as i felt this was our final option, he did and then she was put on the combination of both medications. You can research Dr Proven as there is a lot of info about him I remember even finding a video of a conference he was speaking at. As for taking a medication everyday and having side effects , all medications have there degree of 'danger and side effect' you just have to weigh up what is better for your the risk of side effects or the fact you may maintain a stable blood count. Hope this has helped.

[tip-3 in reply to dp1204]

The hemo is supposed to check your liver function on every CBC and maintain a healthy balance of the medicine.

[4ladylove in reply to Lindylou86]

Well by the talks of most haemotologist that 50 is okay range so your daughter dropping Down to 103,000 pose no threat to her so I would stick to the lower dosage to see how that works.

[Avantidave1988 in reply to Lindylou86]

Does it cause insomnia as side effect

[dizz]

Hi I am on Eltrombopag and got it prescribed 2 weeks ago. No noticeable side effects so far. Although avoiding anything with Calcium in for 4 hours before and after taking it is a pain

[poppy5]

Thank you for all replys, people/children taking eltrombopag is this through NHS or private healthcare, as didn't think was avaliable on nhs yet? Lindylou86 if you don't mind me asking who is your haematolagist maybe you could private message me, many thanks.

[dizz in reply to poppy5]

Yes through NHS. I have had the drug for two weeks now.

[Lindylou86 in reply to poppy5]

Hi we live in Scotland and Eltrombopag is available on the NHS here, I think it has been recommended by NICE for use in England as well but you would have to research. Our haematologist works out of our local hospital. There is a lot of help and information on the internet regarding ITP it is just a case of searching and trawling, I seemed to spend lots of time when my daughter was ill last year researching ITP just to enable me to be able to ask the relevant questions and understand the answers I was receiving from different doctors. Hope I have helped, message me if you need any more info or just need to talk as it helps speaking with people who have been or are in a similar situation to yourself. I found the health unlocked website was a great help to me last year as people on here are going through the same as you. Take care. Regards

[4ladylove in reply to poppy5]

Are You in The Us? I'm trying to get my hands in this drug for my daughter so disparatly!!..please inbox me at

[e-mail]

[crissy22a]

Yes its available . Im on it now. This is my fourth week. So far no side effects.Platelets are going up slowly. Im not having another blood test for 2 weeks now so fingers crossed.

[4ladylove in reply to crissy22a]

Do you know if this is used in the USA?

[crissy22a]

Hi poppy 5, yes iv been on eltromobpag, but it didnt work for me im afraid. Im now on romboplostim. It's been working for me for the last year and its been great. Hope it works for you. Crissy22a

[tip-3]

I have been on Eltrombopag for almost a year in July 2017; at first I did not notice any symptoms; but developed a real bad cough/cold this winter which a lot of other people had as well; but mine lasted much longer; and I am glad it did not go into pneumonia; had 2 bouts of food poisoning (none of the aforementioned is associated w/Promacta); but then started to notice I had to urinate frequently; dry mouth; few pangs in stomach area; felt dizzy but passed; brain fog; swollen gland (1st right side; then left); but went away when I drank O.J.; now noticing tiny bruises on legs and hand from cat playing; (note I never bruised before); and my count has been fluctuating up and down; last count was 27 from 35. At first count was in the 90's; 80's; 70's; 60's; 50's and then kept going down. But I recently read it is a maintenance drug and the target is to stay around 50K; but simply put the safe target range is 30K-70K. If too high, can cause problems.