Starting a new therapy for Itp

[22-patience]

Has anyone taken Promacta (eltrombopag) as a treatment for ITP? I am starting the pill on Monday and terribly anxious after reading the terrible side effects list. Sounds even worse than taking steroids which I have been doing daily for eight years. Any information on personal experience with this drug would be greatly appreciated. Thank you.

[JasonJ]

Hi, I have had no effects from taking Electrombopag, been on it for almost 6 months. So much better than steroids 😄.

However the effect for me has weakened so my platelets at the start were 144 with 50mg, now I have 60 and take 75mg. I also need a low dose of prednisolone unfortunately, otherwise my count drops even more.

Steroids on their own had almost no effect, without Electrombopag I would have a count under 10.

Good luck!

Jason

[22-patience in reply to JasonJ]

So, Jason, thanks so much for your reply. Tell me, what is your dosing schedule? What time do day/night do you take the eltrombopag? I do a lot of dairy so trying to figure out how do people take this drug and then have to wait four hours before any calcium/magnesium containing products. I guess 4 am might be a good time then I could have my coffee/cream at 8. Minor detail. Just glad to hear no terrible side effects for you. Thanks again.

[JasonJ in reply to 22-patience]

I take it at midnight, so I can't have dairy after 8pm. It is a bit of a pain, but I can live with it. 😃

If you don't mind waking up in the middle of the night then 3-4am is perfect!

[sailor]

G'day. I took eltrombopag for a limited time to raise my count from 10 ( which was my norm for the last 10 years) to over 100 which was necessary for bypass heart surgery. Within a short space of time it raised my count to figures I had only previously dreamed about but immediately after the operation, I came off and the count reverted to my usual 10. Not withstanding, that was 2 years back, but since then my count has risen and on my last test it was upto 50 with NO MEDICATION. This I understand is not uncommon with some recipients. I had no side effects during the 2 months I was taking the drug so I would say, do not worry, take the drug and good luck. Hope it works for you.

[22-patience in reply to sailor]

Hello, Sailor. Thanks for your reply. I really do appreciate your help. I am wondering why you were taken off eltrombopag if it was helping to increase your platelets. I trust your surgery was very successful. I am glad to hear you did not have bad side effects from the Eltrombopag. What time of day did you take it? One has to wait soooo long after taking it before they can have dairy products. I do a lot of dairy as I have osteoporosis. The steroids have really done a number on my body. It is my hope to get off steroids permanently. Big hope! Thanks again. 22-Patience

[sailor in reply to 22-patience]

Hi 22- Patience. I am fortunate that I do not bleed spontaneously and so I can live quite happily on a count of 10. I started with ITP 20+ years ago and the only meds that worked on me was Ivig. I was infused with this every 6 months or so but as time lapsed, so my count dropped quicker and quicker. In the end I was spending a day a week in hospital having Ivig. About that time, the world authorities decided that, providing you do not bleed spontaneously, why take medication. I was taken off Ivig and they watched and waited. Nothing happened except my count remained around the 10 mark. As I said, that was 10+ years back and I only had Ivig if I needed any surgery ( which thankfully was always minor until bypass.) I had one major bleed when I was admitted and I was given Ivig and platelets. After 16 hours the bleeding stopped.

I do not know where you live or where you are receiving treatment but if you look at the ITP Support Association website there are two important articles. One is the forum which is a list of specialist centers around the country who can give proper advice on ITP. The second is a report by the leading haematologists in the USA and UK all of whom are the best in ITP. This is under International Consensus on ITP. Read this and you will learn a considerable amount. In short, the count is not necessarily the most important. Quality of life is important and long term steroids do not provide this, quiet the reverse. 8 years is ridiculous.

As to checking my count, I visit the clinic once a year but with the proviso that if I do bleed, I am to go into A&E and to be ever mindful that a low platelet count does need to be respected. Dangerous past times are not a good idea so I have stopped skiing and do not partake of any other dangerous past times. I fly fairly regularly with my interests and work, have not changed my diet as there is no necessity to and generally just get on with my life. Yes I do bruise sometimes, but I can live with that. At 71 it does not really matter.

I am not a medical adviser and can only tell as it affect me. Unfortunately we are all different and react in different way to the various medications available. Eltrombopag and Romiplostin are the 2 new TPO wonder drugs that work to boost the platelet production in the bone marrow. The old drugs suppressed the immune system so a different approach. The results appear to be good but the long term effects are not known.

If you have any doubts, and your in the UK you are entitled to seek a second opinion and I have no hesitation in recommending any of the centres from the list in the Forum.

Finally, I took the eltrombopag at night which was fine for me.

I can only re-iterate, read the ITP web site especially the 2 sections mentioned and don't get hung up on the count.

Thanks for your comments on the bypass. I think it was a success.

[tip-3 in reply to sailor]

Happy to hear your bypass surgery was a success and you are leading an active and normal life ... congratulations to you and your positive outlook .....

[tip-3 in reply to sailor]

thank you Sailor for your helpful information re: ITP .... and I wish you the best after your surgery ... I am on Promacta for 7 mos. and my counts are stable between 68 to 88 as they fluctuate; but it is higher than my original count of 13; but I do wish to get off of this medication and remain pill free if I do not have any signs and symptoms and deal with it naturally unless, of course, I needed surgery and/or dental work .... Best wishes to you and thanks for your encouraging words of wisdom to all ITPers who are somewhat in the dark at first ....

[gr8tmumof2]

My daughter was actually on the drug trial for eltrombopeg. It did amazing for her !!! No side effects at all.but just make sure your not taking any milk products witb it 2 hours before and 4 hours after. It can mess up how well it gets into your body

[22-patience in reply to gr8tmumof2]

Thanks for your reply. Did it take a long time to get the dose adjusted? How long did your daughter have to be on it? Why did they take her off. Did she go into remission? Thanks so much for your help. Patience

[hassell83]

I have been on Eltrombopag for over 2 years now. It has been the only med that has helped me. My count does go up and down, like Feb. 18th. is went to 5, so I take dexamethasone for a couple days. On Feb. 26th. it went up to 648. I have had quite a few high counts in the last year. I have had no side effects from this drug. All the best to you. Val

[takari]

I take promacta but have only been on it for a month. Started with platelets at 84, second week at 108 and third week at 135. Get to go 2 weeks now before getting tested again. Had a few side effects but nothing serious and nothing that lasted.

[Jami89]

Hi I have been taking Eltrombopag for almost two years and I think it has been good to my body. I am on 50mg everyday and my platelets were 18 and since Im taking this tablet they are about 112 to 160.

I always take my tablet early in the morning around 4 or 5.

the only side effect I can think of is my muscle pain aound neck and shoulder and by doing excersice it is going okay.

All the best.