PROMACTA ?? anyone on it ???

[exxxon]

anyone on promacta ????????? on it for 2 weeks now and get a platlelet count tomorrow ….. will let all know tomorrow .. doctor says it's the best with little side effects ?? very expensive ………………… ANYONE GET CIRCULAR PURPLE ROUND SPOTS ON THE LEGS SMALLER THAN DIME … THEY ARE PURPLE THEN RED THEN WHITE AND THEN GO AWAY … REALLY WEIRD .. THIS DISEASE IS AN INVASION …. IIF NOTHING WORKS I WILL DO THE SPLEEN AND LIVER SCAN AND IF THE PLATELETS ARE BEING DESTROYED BY MY SPLEEN I WILL GET IT REMOVED … LETS FIND A CURE …. BEST TO ALL .. JIMMY … MIAMI FLORIDA

[Justicekelly]

yes, I was on promacta for only 5 days and my platelet count went up to 140,000 and I was 30-40,000 for the last 3 years on average. It is amazing. But because of the cost I choose not to continue. The pills are 8,000 each month. You get 1.5 months free each year, thanks to the company but my copays are just too high. On average right now I pay 7-8,000 for my insurance and meds each year. With these pills I would be paying 14-15,000 a year and I just can't do that right now. i wish i could afford those pills, they are the cure we all have been looking for.

[debc1987 in reply to Justicekelly]

Sorry to hear that . Promacata has worked well for my son for over a year now . Sounds like you have private insurance , did you know they have a patient assistance program? You just need to contact the company and sign up Novartis . I hope this info helps !

[Justicekelly in reply to debc1987]

thanks. the patient assistance program is only $15,000 free for a year. I run my own business so I have to pay for insurance 100%.

[exxxon in reply to Justicekelly]

IS THAT 8000 AMERICAN DOLLARS .. I HOPE NOT … YOU ARE IN CANADA ??? THE GOVERNMENT PAYS MY TAB HERE IN THE U.S. AT LEAST YOU ARE OUT OF THE DANGER ZONE AT 30000 … GOD BLESS .. JIMMY .. WHAT ARE YOU TAKING TO MAINTAIN THE 30000 ????????? stay well . jimmy

[Justicekelly in reply to exxxon]

Yes, in america it cost $8000.00 USD for only 1 month supply!

[KA442 in reply to Justicekelly]

U live in Canada or U.S??

[Justicekelly in reply to exxxon]

I had RITUXAN chemotherapy over a year ago and it has kept me steady at 30-40,000. Before that I could not be above 10,000 without Steroids.

[KA442 in reply to exxxon]

You both live in U.S . Exxon, the govt pays for your med . and justicekelly , why does the govt doesn't pay for your medicine.. I just need more information on this.. Kindly tell me why is it so.

[Mds61811]

My son have ITP too he took 25 mg of promacta it doesnt work! So they increased to 50 last Friday it went up to 90,000 but I'm not sure if I want him to be on it too long so we will wait and see.

[exxxon in reply to Mds61811]

they put me on 50 mg. at the start so its exciting and I hope it will last .. possibility one can go into remission during the 1st year of diagnosis ??? so says the web site ?? what do you know of promacta side effects ??? thanks and stay well .. jimmy

[Justicekelly in reply to exxxon]

No side effects, only thing is it can cause stroke or heart problems but you can see the signs clearly way before it happens so you can stop taking it in time. My doc said the signs were swollen legs and chest pains.

[Justicekelly in reply to Mds61811]

If your insurance pays for it and he is up to 90,000. Why you would not want him on it. ITP is nothing to mess around with. That is an amazing number. How is it not working? what was his number before the meds?

[LifeafterITP]

Have been on Promacta (Eltrombopag) 50mg / day for 4 years and no side effects. My platelets were 2000 when I started, were 60 - 90,000 for 1st year but now average 150,000 for the last year. My Haemotologist is going to start a slight reduction in dose to see if I can maintain my count with a reduced dose. It is a very expensive drug, fortunately I live in a country with a free health system for all or my life would be very different right now.

[prudencepayes in reply to LifeafterITP]

How true. My life has also been transofrmed by this drug. I get free health care as I live in the UK. We must never forget how lucky we are to be able to choose any of the treatments available without having to consider the cost !

[Georgiagirl61]

I am taking promacta and doing well. Started at 50, and they reduced the dosage just after I had a refill. So I took them every other day, and still did well. I've been reduced now to 12.5, but a using up the 25 mg pills, so I am taking them every other day. Last visit, my platelets were over 200! Hope it holds! I haven't had any real side effects. Good luck!

[exxxon in reply to Georgiagirl61]

yes Georgia promacta seems to be the best .. we must inform everyone afflictated and find a way to help them pay for promacta .. your a t 200 k and that's wonderful .. stay in touch .. jimmy

[JBSS]

My daughter has been on Promacta 25 mg as a bridge therapy for almost two months now. She is scheduled for a splenectomy this coming week. Promacta boosted her counts very low 24 K in a week to 94 K in three weeks. Then she got all four vaccine s to prepare herself for spleen removal .