Over Three Years On Ruxolitinib For Pv and Life is Normal

[nj4291]

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?

[Norar]

Sounds promising I have only been on it for just over three months.Thankyou for letting us no

[Norar in reply to Norar]

Been to heamtoligy this morning she seems happy enough said bloods were ok platlets 139 been haveing weekly injections to make red blood cells Eprex .

she said its doing its job .up to 8.2 Looking at upping my dose of Rux next month back to 20 mg

So we see how tha go,s

[Paul42]

Hi

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.

[nj4291 in reply to Paul42]

Hi Paul,

Glad to here your ok. My spleen started to shrink within a week of the drug. So bizarre I have been so lucky.

Good luck with the spleen reduction

[Paul42 in reply to nj4291]

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.

[Jennifer1974 in reply to Paul42]

Wondering why it doesn't reduce spleen size in everyone? I guess that is why there are other JAK2 inhibitors in the works?

[Paul42 in reply to Jennifer1974]

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

[Jennifer1974 in reply to Paul42]

Does it cause you pain? How come it wasn't noticed back in 2003?

[Paul42 in reply to Jennifer1974]

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.

[Jennifer1974 in reply to Paul42]

I'm glad you're not in pain..

[Paul42 in reply to Jennifer1974]

Ha no, the only pain i get is when i have to go for my endoscopy to check my varices.

The average time of an endoscopy is about 3 minutes, my record so far is 32 minutes. Having a tube down your throat for that length of time is one of the worst things ive ever had done.

[Jennifer1974]

Are you JAK2+? That is fantastic news! I'm recently diagnosed ET JAK2+ and could use some good news!!

[Loubprv Volunteer]

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!

Louise

[tracey13 in reply to Loubprv]

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

[tracey13]

Are you living in the UK. My husband has pv jak 2 positive.

We've been reading up on the drug ypur on it seems so much better than the hydroxy.

My husband is 44 years old he's absolutely drained every day.

He travels an hour to work and does 9 hour day he just wants rid of the fatigue.

[nj4291 in reply to tracey13]

Hi Tracey

Yes Im in the Uk and 43. I can remember the tiredness for sure. Im also jak2 + with pv . What county are you from?

[tracey13 in reply to nj4291]

HI,

We live in the UK in the north east in a town called hartlepool.

Thanks

[Chicagopv]

Been great help with itching but it’s lowered my resistance a lot. Bronchitis six times a year, infection on my lip, and so on. As the French say, I’m between two chairs when it comes to Jakafi.