Eltrombopag vs Romiplostim

[Gabriella28]

Has anyone had BOTH of these drugs? I am considering asking my haematologist if I can switch (after being on eltrombopag for 3 months) to Romiplostim. I see from a table showing a summary of treatments for ITP that there is a whole long list of side effects with eltrombopag but nothing significant listed at all for Romiplostim. According to a pharmacist I spoke to recently 10% of patients suffer hair loss (alopecia) on eltrombopag, and I am one of them. Quite distressing as I don’t know where it will end.

[ssbanu]

Dear Gabriella28,

I was on eltrombopag and suffered from a no. of side effects including moderate alopecia but didn't get any improvement on platelet count. So, I quit it and now on nothing specific for ITP, though my PC is around 10,000 only. I'm only on vitamin supplements. I'm working and moving with this count as to me "it's better to suffer from only the disease than to suffer from both disease and medications and also financially". Plz boost yourself with positive thinkings, live on balanced diet, take sound sleep and proper rest and be careful about intracranial haemorrhage. It's only my opinion from my personal experiences. God bless 🌺🌺💙💙🥰🥰🥰🥰🥰🥰🥰

[rizzo1018 in reply to ssbanu]

ss .. what vitamins are you taking ?? 10 k is exremely low bro !! are you brusing and have those little pink dots all over the arms and legs ?? i am on 75 mg. promacta and melatonin and AT 50 / 60 count .. so far so good .. but we need a cure !!!!!!!!! i am connsidering spleen removal and talking to hematologits who say its a 50 / 50 gamble and after you are more prone for infections especially thr corona virus .. talk to me bro .. are you in the u s a ?? i am in florida .. jimmy

[Gabriella28 in reply to ssbanu]

Thanks for sharing that ssbanu. I am on 75 mg eltrombopag (who thinks these names up for goodness sake!) and actually my count is going up at last. I have been told yesterday it is at 70 (don’t understand 10,000 - is it equivalent to 10?). The doctor said as soon as I stabilise at this or better I can begin to reduce the dose with the aim of coming off it completely in 3 - 6 months. That’s fine so long as I’m not totally bald by then. When I told him about the hair loss he mentioned lupus which is definitely something I do not want to hear. Do not need another autoimmune disease thank you!

I wish you luck on the vitamins but please be careful yourself and I hope you can get the count up to a better level soon.

[Kazpig1]

Hi I have had both of these drugs and suffered from side effects with both. Alopecia was not one of them fortunately for me, it was mainly joint pain headaches and nausea. I was taken off both as they had no effect on my platelet levels at all, they remained firmly at 0 throughout treatment using both drugs

[Gabriella28 in reply to Kazpig1]

Kazpig1 thanks for your comment. So are you on nothing now? They can’t abandon you on a zero count. No other drugs suggested? I think what we need to investigate is whether the bone marrow is producing enough platelets but then they get destroyed in the spleen or liver OR that not enough are being produced in the first place AND then even those few are getting destroyed or just or it’s just that not enough being produced. Then there seem to be drugs for doing different things to tackle the issues accordingly. I resisted the bone biopsy but it wasn’t being pushed particularly anyway. But that would tell you a lot all the same.

Good luck Kazpig1 I hope your levels can be brought up soon somehow.

[Kazpig1 in reply to Gabriella28]

Hi I had the bone biopsy and an indium Scan which only seems to be available in certain countries, my platelets are being destroyed in my liver so no point having a splenectomy which I was at one point considering. For the last 6+ months I have been on Azathioprine and Rapamune ( I have had everything else and had 0 platelets for 4 years). The combination brought my platelets up To 150 at one point, however I have had a dip over the last few weeks and they dropped down to 30 so a week of steroids and they seem to be on the up again( fingers crossed)