Ruxolitinib for ET?

[Lab-Rat]

Is Rux approved for ET? I had to stop taking Hydrea due to developing vasculitis/erythema nodosum caused by the Hydrea. My doctor is now motivating to my medical insurance that I start Rux. I was under the impression that Rux is now phase 3 for ET and not yet approved?

[socrates_8]

Hey Yvette...

My guess is that it might vary a little from country to country...?

I am in Sydney, Australia...

I also had problems tolerating HU for a number of reasons, and was eventually moved to Interferon Alpha injections every two (2) days. I coped better (symptom & side-effects wise) with that but was never comfortable injecting myself subcutaneously (I was also concerned it might prove problematic for visiting friends o/s or just moving from one place to another etc).

In Australia, those like me, who were diagnosed as Pre-Fibrotic, Post ET, or PV, can access Ruxolitinib via the PBS.

Your specialist, should know of the International testing standards, in order to become eligible for Jakafi (Ruxolitinib) etc.

I would possibly start there Yvette... Maybe Maz could shed some light for you via advice from Prof. Harrison?

Best wishes

Steve

[Lab-Rat in reply to socrates_8]

Hi Steve

Thanks for your reply. The oncologist said he has never prescribed Rux before, I am the first. I will ask Maz wrt the status of Rux for ET. But I guess I wil know the answer once I get feedback from my medical aid in about 2 weeks time. I'd be very surprised if Rux was approved for ET in South Africa when it is not yet so elsewhere.

All of the best to you.

Yvette

[socrates_8 in reply to Lab-Rat]

Hey again...

Yvette, at first I did not think that I could get here in Australia either. However, it just came down to results of my tests and symptoms.

I have heard somewhere that there might have been some testing being conducted specifically for ET sufferers, but that was likely through a clinical trial...

Hence, it might also pay to ask your specialist about what clinical trials that you might be eligible for in Sth Africa etc...

Best wishes

Steve

[Mazcd Partner MPNVoice in reply to Lab-Rat]

Hello Yvette, sorry but I don't know is the answer. Maz

[Lab-Rat in reply to Mazcd]

Thanks Maz for getting back to me.

[Jennifer1974]

I don't think it's approved for ET but I think Drs can prescribe for "off label" use? I'm sure it will be a fight with insurance..I know it would be in the USA

[Lab-Rat in reply to Jennifer1974]

Hi Jennifer

Thanks, yes I'm very sure it is going to be a fight!

[mickey64]

Hi Yvetter, I'm from the USA and my hematologist said he having great results with Rux especially if your Jak2+, I am also ET and he wanted me to try it, it was denied on the first go around with my insurance as I expected because it is not approved for ET, but they can get it through on Appeal. I also know someone else who is taking it and is having great results and no side effects at all, she is also ET and hers went right through, now that could have been because her Doctor said she was pre-MF but she found later from expert she was not but the expert told her to keep taking it. I think there are clinical trials with it for ET in the US and I am noticing a lot of people Doctors are starting to prescribe it for ET. As with all these drugs it is strong it is still listing under the Chemo category of drugs but it is biological which means it works with your immune system. I personally would like to try Pegasy first and save Rux for last only because I have heard on several forums it is a drug to take last due to it could stop working. Best wishes Mickey

[Lab-Rat]

Hi Mickey, thanks so much for your reply. It is great to hear that Rux is working so well for ET. I am expecting to hear from my medical aid soon. Let us know how Pegasys is working out for you.