Revolade (Promacta)

The news on Australian television last night featured a story about ITP (really unusual here because there really is no mention of ITP) but it was to say that a new wonder drug called Revolade had been added to our PBS scheme, so now we can get access to Revolade for $38.00 instead of the thousands it was costing. I wonder why it is called different things in different countries?

Hi Milly,
The trial name for the drug is eltrombopag. I am still on the trial and will have been on it 5 years come February 2012. I am not sure if it is eltrombopag or revolade which is the generic name for the drug. I have assumed that Promacta was the brand name. Maybe others will clarify.

The story on the channel 10 health report featured one our PDSA members, Rad. Sadly the channel 10 website will not let me view the video of the programme as I am out of zone here in New Zealand. Milly would it be possible for you to post the video on YouTube or on this site and give us the link in this thread? I would love to see Rad interviewed and hear more about Eltrombopag and it's progress in Australia.

Thanks.

I will do that, I can't believe that was Rad, I will just try to figure out the best way so you can see it, was really good to see that it was mentioned on the news.

Try this if it doesn't work let me know, I will get it to you some way or other
www.youtube.com/watch?v=bPYn1J5S81E&fb_source=message

I can also send you a link on face book, just send me an email. I hope you are going ok, I just missed you last time I was on the chat on Tuesday nights, is it working for you?

The news story was fascinating, Milly, but it could really terrify people who've just been diagnosed. Do you know if RAD's ITP hadn't responded to any other treatments?

Hey Karen,
I really didn't want to scare anyone, this is Rads story we are all different. I hope when snowgoose comes back on she might be able to give a bit more info, from memory Rad has battled with low counts and hasn't really responded to any other treatments (hopefully she might see the story on here and let us know).
I am more then happy to remove the story if anyone is worried about it, I just want Snowgoose to see it first.
I do understand what you are saying though, one of the training doctors scared the life out of me when I was first dx. Told me I was like a walking time bomb, so not true.

Hi Milly and Karen,

I just found out that the video was on here. It definitely was not meant to terrify people, more to let patients with ITP know that there is a new treatment out there that is now available on the Aussie PBS and that can help people.

Yes I did respond to some treatments initially but after time they stopped working. I have not had the greatest response to Revolade but at least I am now out of the danger zone, ie above 10. Just remember that if I had wanted to have babies it would have been well before Revolade (Eltrombopag/Promacta) had been invented and it would have been dangerous for me.

We are all very individual and yes it is my story, but it is a good one that Revolade has given me a better quality of life. I looked a bit worried initially because the light was so bright in my eyes!

Revolade is a very good thing for refractory patients like me and for new ITP patients as it is an oral medication with few side effects that does give a lot of patients good results.

Rad, I hope you didn't mind that I posted your story. I found it to be interesting, the only thing in the story that I found scary was the picture of the little child and not really scary more heartbreaking.
I am really pleased that revolade is now on our PBS and as you would know ITP is really unknown in Australia, so I was happy to see a story about it on TV.
So thank you Rad for telling your story and I hope it continues to help to keep you out of the danger zone. I think the thing we have to remember that there are people like me that have ITP and it plays up every now and again and I get some treatment and life goes on and there are people like you that this must be a battle for and this is one drug that has helped you and that can only be a positive.
Milly

I certainly don't want to suggest that the story and the film shouldn't be posted. I too found them interesting and am glad that Promacta helps RAD and others.

It's just that we read on these threads comments from people who are so scared. It's always good to reassure them that many of us with ITP are able to have quite normal lives--working, playing, becoming parents, raising children, etc..

Interesting indeed. Glad it's finally getting out there!
I believe eltrombopag is the name of the drug and different distributors give it different names.

The drug name is Eltrombopag and the trade name in Australia is Revolade and Promacta in the USA.

Interesting and glad to see some discussion about promacta. I'm going to start it tomorrow after the blood work Friday, so we'll see if there's any sort of response... (last read at 4000).