What's the latest Jakafi (ruxolitinib) for polycythemia vera (PV)?

@lwengel, as you likely already know, the USA Food and Drug Administration (FDA) approved December, 2014 a new use for ruxolitinib (Jakafi) to treat patients with polycythemia vera, a chronic type of bone marrow disease. Ruxolitinib is the first drug approved by the FDA for this condition.

@pamdg @stevehurlburt @rspriggle may be able to add their experiences with it.

@lwengel, what kind of information are you looking for?

I had read in one article that Jakafi raises platelet levels which would increase clotting chances.

I have ET. The info I got from my hemo is that Jakafi causes weight gain and can increase hypertension. My doc said that if the HU quits working she would look at Pegasus (interferon) before Jakafi.

A few years ago, there were reports about a possible link between Jakafi. Looks like the drug's own website lists this as well as other side effects (scroll down to bottom of page): https://www.jakafi.com/

I also read that Jakafi increases chances of blood clots in PV patients.

Interesting, since that's exactly what happened after I started Jakafi. My platelets doubled in one week from 510-1100 (after just a couple weeks and stopping hydroxyurea). Doctor added hydroxyurea back in to hopefully control the platelets until Jakafi kicks in, and increased JK dose to 15mg 2x/day. Almost a month in, I feel worse than I did while on hydroxyurea which had minimal side effects for me, though my PV symptom of itchy skin didn't improve, which is why the switch to JK (still no improvement on itchiness).

I was 2 years on hydroxyurea and then told to go on jakifi. Felt reL good for about 2 months then started to get tired and dizzy at times but I think it is Pv.Any body over 78 on Jakifi.They say the average death is 78 from pv.hope they are wrong

I am 83 and have been taking Jakafi for five years

Thank you for your reply makes me feel better.How long have you had PV

Not sure where you got that information. They can’t say an average life span is 78 with PV when people who have it have been diagnosed at all different ages. Some people are dealing with multiple diagnoses or health issues on top of the PV which can contribute to life span. Try not to believe everything you read. But seriously, I was diagnosed at 55 with PV and 78 sounds pretty good 😉

Thank you for the reply.I read it on a medclinic site andI guess getting close to that age was worried.But what you said makes sense.