Has anyone used Promacta (Revolade)

Hi,I am adult female, 57 who has ITP for about 15 years. I have gone through a number of treatments including prednisone, IVIG, spenectomy, Rituxan and now am starting on Revolade in the next week or so. My last platelet count was 17,000. If anyone has comments on Revolade, side effects both long and short term and how it worked for them it would be great to hear from you.
Jill

Most of the posters here are from US and there they call it Promacta, so anything you see on the forum about Promacta will be relevant to you.

I am from the UK and didn't try Revolade but used Nplate which is sort of similar and had good response with it.

Thanks for the name information, that's good to know. How long have you been on it and any side effects?

I used Nplate for three years, had no side effects and was able to stop using it with my count staying around 80. These drugs, Nplate and Revolade do push some into remission.

I have been using Promacta (25mg daily) for nearly a year now with no issues.

I have been on high dose Prednisone, IVIG, Retux, Promacta. I recent have been taken off promacta (75mg daily)due to the fact that I developed a PE. now I am off promacta and on 10mg of Coumadin and heparin shots to the abdomen daily. my count is 725 and my INR is 1.7. What is next for me? I am 49 y/o and had a Splenectomy 25 years ago foe ITP.

John:

At this point, you have to take things as they come and deal with them accordingly. Since your counts are too high and you have experienced clotting, you won't have to treat the ITP unless counts drop too low. If that time comes, there will be a way to manage it. For now, you have to concentrate on the clotting issues.

I am taking 25 mg a day. I began with 50 mg and at about the end of a month experienced chest pains that sent me to the emergency room. The side effects info provided by the drug manufacturer lists all kinds of possible side effects, but chest pain isn't mentioned prominently. But there have been at least six reports to the US Food & Drug Administration from patients who have experienced chest pain, all male, all about 60, all at the end of a month of taking 50 mg. The 50 mg dose seemed to be working for me. Platelet count went from 20 to 63 (which is pretty high for me) before I discontinued it. Only side effect I experienced was occasional mild headache, which is among the most common. I'm considering stepping up dosage to 50 mg again, hoping my body is more acclimated to the drug. At 25 mg, count ranges from 15 to 23 (which I can live with). As I understand it, the main difference between N-Plate and ProMacta is that N-Plate is far more expensive. Patient response to ProMacta has resulted in remission of ITP in many cases, but the drug is still fairly new so it will be interesting to see what happens long term. Besides the chest pain I experienced with the higher dose, the main issue for me has been the timing of when to take it. Should be taken on an empty stomach, can't be taken within 4 hours of a mean of high-calcium content, etc.

Hi Jill,
I have been taking it since December. I started with 25mg then went to 50mg for 6 weeks. My counts went from 7k to 166k. The Hemo took me off then but counts dropped again. I then took 50 every other day and even doing so dropped back to 3k last month. I am now taking 75mg a day and last check had me back up to 50k. I did not ever respond to prednisone, IVIG or rituxan. So even though it stopped working for me, it seems to have started working again.

I am only now experiencing slight side effects- a little hair loss,fatigue and headache. I have begun taking it when I wake up during the night so that it can work on a really empty stomach. I am so glad I left my local Hemo and went into the city. The local Dr. had never used it and was at a loss as to what to do next.
I wish you well!
Anne Marie

I am a 67 year old female in Aberdeen Scotland, Uk.I am treated at a large University teaching hospital . I was diagnosed with itp 2years 8 months ago. Both Prednisone and ivig were ineffective and an indium scan showed as much destruction in my liver as my spleen so a splenectomy was not considered. My consultant doesn't like doing these anyway. I have been on eltrombopag since shortly after diagnosis. On a 50 mg daily dose it raised my count from 3 to 115, high enough to have surgery for another problem. On a lower dose it kept me at a low but safe level of around 50 till 5 months ago when my response declined gradually and despite increasing the dose again I was at 7 last week. I am now on an even higher dose , 50 mg and 75 mg on alternate days and here 's hoping it starts to work again. I don't have a problem about taking it in the middle of the night when I eat late as I usually wake up anyway. I have had no noticeable side effects from the drug but am very tired with a count of about 10. I am very grateful to the NHS in Scotland for funding my treatment with no quibbles .It has enabled me to lead a completely normal life, including foreign travel, up to this point. I cannot praise my haemo consultants highly enough and feel sorry for all the folks who experience less expert care.

That's a wonderful story! You are lucky to have such great access to health care in all aspects. I can assure you that is not the case a good bit of the time!

I have now developed an all over itch which seems to be related to taking the max dose,75mg, of eltrombopag on alternate days wiith 50mg. Has anyone else ever had this? My count is hopefully creeping up again from 7 to 12 now . I guess it's better to be itchy but safer.

I started taking Promacta (Revolade) about 2 months ago and have had a great response so far, counts as high as 320,000 averaging about 200,000. I take it first think in the morning and then try to not eat for the next 3-4 hours. I have experienced some pain in my right hand fingertips, not sure if this is from the drug or not or tendinitis. I have also experienced soreness/tenderness in my right calf muscle and lower leg when I stand up. My hemo sent me for an ultrasound to check for blood clots but didn't find anything. This is very gradually going away, not sure what it is. Good luck to everyone out there trying this drug!!

I have been on Promacta (Revolade) now for 3 months and am still experiencing tenderness in my right hand fingertips (it comes and goes) as well as the toes on my left foot (this comes and goes as well) Has anyone on this drug had these side affects.
Thanks,
Jill

No haven't had any pains and my itch has gone . Sadly I seem to be no longer responding to Revolade so will be changing to Romiplostin in two weeks . Before that I am off to France on holiday - by train as my consultant says it is unsafe to fly with a count of 9. Luckily I am staying near Toulouse which has great medical facilities. I just hope I don't need them!

Sorry to hear that, but hope you have a good and safe trip. I hope the new drug works, is it a pill like Revolade? How long did the Revolade work for you? I have now developed along with the finger and toe pains a sore and redness in my one leg. it's the 2nd time since starting Revolade, I guess another call to the doc today.

Hi Anne Marie,
Sorry I deleted the previous post as I realised that you did not stop Promacta and then restart. However you did go low and then rise again. Thanks for your reply. I will hope that my second start on it works My haematologist has now adjusted his expectations of what it could do for me. We would both now be happy to get to10. I will let you know how I get on.