Have been diagnosed with Pv since April 2012 and since June 2013 was lucky enough to get funding for Ruxulitinib. Well just wanted to report that this drug has kept my Hematocrit at .44 for ages now and all blood results come back in the 'normal' range. Don't have any symptoms touch wood and lead a normal life. Work up to 55 hours a week and have a great social life. Is there anyone else out there who has been lucky like me and got Ruxolitinib long term for PV and everything become normal?
Over Three Years On Ruxolitinib For Pv and Life ... - MPN Voice
I am 18 months in on Rux, have PV.
I had shingles initially, and elevated live counts but they have settled and now gone to their best they have been whilst i have had PV.
My spleen hasnt shrunk (1cm only) but at least not grown. My symptoms are fine, blood counts very stable, my platelets did drop to start, going from circa 400 down to 180-200 but have stabalised there which is just fine.
If only my spleen would shrink i would be so happy.
Cheers, glad its working good for you? Did you have any side effects? I had the shingles like i said, and put on Acilivor to keep them away. Also one of the most common is weight gain, i put on about 10 lbs in the first couple of months of taking it.
There is a theory the weight gain side effect is due to the shrinking of the spleen so you can eat more but i know thats not the case ofr myself as appetite was never an issue. I have managed to lose the weight again but really have to work hard to keep it off.
I dont think they really know, i guess others may work and i may get switched to one once trials etc complete.
I have a theory (which is probably miles wide of the mark) that because i know mine was enlarged for a long long time (i think since about 2003), that its because of how long its been enlarged for that it wont go back, i think of it like an elastic band, you know when its been stretched that much it wont return to its smaller size.
Like i say probably well wide of the mark, but you never know
Its never caused me any pain or discomfort, when i was diagnosed they told me it was one of the biggest they had ever seen but i have seen pictures of people with massive spleens, it can make you look pregnant, and mine is nothing like that, its not visible but i can feel it.
I went to the doctors when i first noticed it, and i was examined by two nurses and they said it was just muscle. I think i always doubted that but it did coinicide with me doing a lot of work in the gym so i think i allowed myself to beleive it.
That's wonderful news!
I was offered the trial but declined because I've been on hydroxi for 7 years and fine.....
So great to have a back up though.
Let's hope the numpites at NICE who probably know very little of MPN's will licence for use on PV in England as well as Scotland, otherwise I shall be moving north if necessary, even though I'd have to tolerate Nicola Sturgeon!
My husband is on hydroxy he's been OK on it no side effects. The only thing he really suffers is fatigue. We were hoping his iron levels would come back up but his levels are still rock bottom.
We've read up on that ruxolitinib drug it seems to have more benefits for jak 2 positive this is what my husband has