hi im coming of steroids and platelet count dropping,might have to have rituximab again but it only kept platelets high for over a year,
has anyone had or heard of eltrombopag or romiplostim as consultant is on about trying this on me,apparently its only about 5 years old,
regards
Hi, yes I was on Electrombopag for a year, it did help but the effect started to be less over time. I had to take more and more, plus mix in some steroids help out. In the end I opted for splenectomy, no more meds for me now, count is stable and above 120.
I have been on Eltrombopag (50mg) for about 6 months or so (they started me of on the 25mg pill but that was not effective enough on me). This medication does not massively increase my platelets but it's keeping them stable at around 60-80 or so. Prior to them my platelets were as low as 10, and steroids never worked for me. I take my pill in the evening as you cant have anything dairy for 4+ hours before and after taking, so that suits me best. Have had no side effects from taking the pill either.
I still do not think my body heals very well as I have lots of bruises and cuts all over which take a long time to heal if they ever do.
If you take Eltrombopag, after a little while your hematologist might only want to see you once a month which is good, but obviously will see you more regularly to start with to see how they are reacting on you.
I cant comment on the other drug you mentioned, as only experienced steroids, then Eltrombopag.
Hello, My wife was on eltrombopag 50 mg for 15 days but after 15 days her liver get effected this medicine effect your liver so keep eye on your LFT. Our doctor reduce dose to 25 mg, but Plt count remain low near 20. Initially when she started this as 50mg her count was 40 on friday (CBC) she takes 1st dose on sunday morning (50mg) and monday morning (50mg) and again CBC on same day (monday) Plt count was 152 but after 15 days count was 80.
Thank you and takecare be positive.
I have been on 50mg /day Eltrombopag for 3 1/2 years. My count was about 12 but went up to 140 within a couple of weeks of starting. For the next 2 years I had a couple of highs and lows but mostly a count around 100. For the last year my count has mostly been around 150.
I see my haematologist every 6 months and now have a blood test every 3 months. I have no ill effects, have an active life and do everything I have always done. Eltrombopag has been a success for me.
Romiplostim (which is also known as NPlate) is now a common treatment for ITP albeit still an expensive one. I had great success with it and after 5 months my counts stabilised at 200+ where I have been without any treatments at all for 4 years.
Hi. I've been taking eltrombopag for about 10 months now. Previously I had tried steroids, ivig, rituximab, MMF and azathioprine. None of those treatments had given me any long term benefit and my count was regularly dropping to single figures with consequent fatigue, bleeding and bruising symptoms. I started the eltrombopag with a very low count. The initial dose was 50mg a day. I almost immediately started to feel much healthier. Within 2 weeks my count was over 300. It took a while to find the right dose and my count has dropped to about 50 a couple of times after colds. However, I now take 25mg 5 days a week and that keeps me just over 100. I am monitored every 6 to 8 weeks including liver checks and there has never been any cause for concern. It's true to say that this drug has changed my life and also made my family much less worried about my health. All the best - I hope that you have similar results.
I've been on eltrombopag for 18 months now (after steriods & ivIG didn't work). I started on the 25mg daily dosage and my numbers shot up from a count of 2. Currently I am having my dosage reduced to see if I can maintain my platelet myself at 140 or so. In my case it has had some horrific sides effects (variable bone/joint/muscle pain, mild hair loss, rashes, insomnia and who knows what its doing to my liver) but has kept the numbers up & the potentially fatal bleeding at bay so it's just the trade off I've had to make. I get monitored by my doctor and have regular blood checks. I am not as active as I used to be due to the unpredictable bone pain but I don't let it stop me too much.
Hi, I was on Romiplostim (NPlate) for 3 years, which maintained a count of around 40-50. Initially I had to go to the hospital for the weekly injections, but after a year or so I was taught to self inject at home and given 4 weeks supply of injections at a time. This made life much easier for me, only having to have bloods taken once a month. In February 2017 I found out about Eltrombopag which is in tablet form. At the time I had just booked a holiday abroad which entailed travelling around and as the NPlate needs to be refrigerated, I couldn’t guarantee that this could be carried out. Tablets seemed to be the answer. My haematologist agreed to me trying Eltrombopag. I was started on 50mg daily and my count rocketed to 487! The dose was reduced to 25mg and the count settled at around 120. However a few weeks ago it rose again to 189, so the dose was again reduced to 25mg on alternate days. This resulted I my count dropping to 108 which my haematologist is happy with, and I do not need my bloods taken again until June. Eltrombopag has been a great success for me, nose bleeding and gum bleeding has stopped and I feel great. The only thing I would be wary of is the possibility of eye problems ie cataracts, which is why my haematologist didn’t put me on the tablets at the beginning. However when I pointed out that I’d had both eyes done in the past she agreed to try it. Obviously Eltrombopag has been the right one for me - so far, but remember that ITP is a very fickle condition and not everyone reacts to it in the same way. Good luck!
Hi my daughter has been on Eltrombopag for nearly 5 years, and is continuing to take it although at the time she started it we were told there were no long term data results on it use as it was a relatively new drug. She takes it along with mycophenolate and the combination has kept her bloods at a stable level for the 5 years, previous to this she had tried all other meds but nothing stabilised her count. No more bruising, no bleeding. Her hair has thinned quite a bit but this seems to be the only side effect . She still gets tired easily but is living a normal life now and even if she bumps herself she will get a bruise but nothing like before. Hope this helps.
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