ITP & Eltrombopag to be called Revolade in the UK, Promacta in the USA

[dp1204]

Has anyone had any experience with promacta? I am deciding if to take it or not?

[salmagal]

Hi dp1204 I've taken eltrombo only worked for 2 months its bit of a nuisance with all the dairy foods interacting with it also stomache meds so I was glad to come of it but by all means try it u might do ok hopefully good luck with it

[ShraddhaSingh in reply to salmagal]

Even my mom was recommended Revolade (Promacta) but our doctor told us that once you start Revolade, you've got to take it for life, because if you stop, then the platelet count will drop. Instead we are trying a drug called Dapsone (diamino-diphenyl sulfone) and it seems to be working.

Did your hematologist tell you anything of this sort?

[dp1204 in reply to ShraddhaSingh]

No they didn't thanks for the info.

[dp1204 in reply to salmagal]

Thanks for your reply salmagal.

[dp1204 in reply to salmagal]

Thanks for your reply

[Hidden]

Hi dp,

I've wanted Promacta but my insurance won't cover it even though it's the same medicine as the N-Plate injections I receive. And every symptomn N-Plate has, I have it. Tolerable but a pain in the butt.

So on a weekly basis for 3+ years along with 20mg prednisone (+-). I tend to be stable, almost normal or normal for weeks to months, then something triggers a big drop and this last time I went to 3000. So uppped my prednisone to 80mg, higher dose N-Plate, and within the week was 294,000. How long have you had ITP? I'm sure you find it very annoying too. Especially the weeks I drop the only thing that seems to be different is a higher stress level that week. No odd foods. Also, I found that any artificial sweetners kept me low and once I cut them out it helped keep me higher, longer. I did have rounds of Rituxan and IVIG treatments, but turns out I'm severely allergic to Rituxan, ( and it's forms), and got huge hives with the last IVIG and they never quite determined what, of the combination of drugs might have done it. In both cases I was on a high dose of Prednisone the first times, but low the last times when I had the severe reactions.

I'm actually considering going to England to have the Indium Labeling done to see if a Splenectomy would work. Am tired of the twice weekly trips for lab and injection, the side effects and basically not feeling or looking like myself.

I hope the Promacta works for you, and something is found to work for all of us.

Have a great day! Mikki

[dp1204 in reply to Hidden]

Hi! Thanks for your reply. I have itp for the past 15 years but it started crashing like 6 years ago. I'm always trying natural stuff because I'm so sick of prednisone side effects. But i haven't found anything to work so far. I hate all these meds. I still haven't heard back from the pharmacy if my insurance is going to approve promacta and we put in the request 2 weeks ago. I guess better for me because I really don't want to take it. We'll see. What is the indium labeling? I've never heard of that??

[5052 in reply to dp1204]

It is my understanding they do this in England France and Spain they radioactive platlets in your body and follow them if they go into your spleen that's where the little killers live but if they go into the liver well no point taking out the spleen and did you know that 10% of the population have an extra spleen be it small

[5052 in reply to Hidden]

Hi mikki503 if you find out about the indium labelling test in England I would really like to know and the cost I did have my spleen out in Australia in 2004 it worked for 9 years and then ITP came back this year 2013 am now on NPlate for 9 weeks seems to be working but they found out I have 2 small spleens 11mm and 14mm and might be an idea if they were gone too thanks

[5052]

Hi all I started on eltrombag the tables I took 50 mg for 4 weeks then they upped it to 75 for 5 weeks did not work so now I am on NPlate injections weekly I wish somee one had told me that with NPlate you can adjust the dosage. I have only been on NPlate for 6 weeks my count from 4 to 42

[andrewbe in reply to 5052]

You didn't say if the Nplate is currently working for you. If it is what did your platelets go up to and what were they to begin with?

[bubblesone in reply to 5052]

Hi there I have been taking Eltrombopag since Feb 2014,took platlets up to 17,20,29 by the beging May, but started feeling depressed by the middle of April, and felt very hot, did you have any side effects? I have stopped taken El, platlets have dropped after a week to 13, may drop lower as sit at 7. What are NPlate injections.?

[tip-3]

I've been on it for almost a year (50mg); and in the beginning I did not notice any symptoms until later; mostly minor; but my plates are bouncing and the last was at 27. They have been 100's; 90's and on and on ... but I read this is a maintenance drug and is only designed to keep platelets at a safe range which I read was 30K-70K; and the target being 50K. It is not meant to have high numbers as this can pose medical problems. I did experience minor symptoms (frequent urinating; diarrhea; abdominal pangs; sore throat (left side; then right); blurry vision; thinning of hair somewhat; dizzy; numbness in left hand; small tiny bruises from playful cat (note I never bruised before by cat); extreme fatigue; but mostly tolerable and these symptoms do not last for long periods of time. I hope it works well for you and you can maintain a safe range.