Hydroxycarbimide to Ruxolitinib - 4 weeks on....

[AirconBob]

Jak2 pos PV, nine years on hydroxy and venisections... Started Rux 4 weeks ago, continuing with Hydroxy at the same time.

I had a venesection booked for day 7, HCT was just on target at 45, so it seemed rude not to go ahead. with hindsight, probably not a good idea - HCT dropped to 41 by day nine, the lowest by far in nine years.

Stopped Hydroxy on day 17. HCT stayed stable at 41-42.

On night 20, after having bad night sweats for as long as can remember, they suddenly stopped. I still sometimes wake 'a bit warm' -but not dripping wet.

Not much difference with tiredness so far but early days..

All beyond my wildest hopes so far....

Downsides - Lots of wind, but fortunately not too smelly. They say weight gain might be a problem, I have noticed that I feel hungry much more than before, but am trying to ignore it and keep my diet the same as before. No noticeable weight gain yet, watch this space.... I also feel a bit disorientated from time to time, but I also had a head cold on week 2-3, so more likely that..

All the signs are that Ruxolitinib is working for me as advertised, with negligible side effects, so those of you who qualify should push for it.

Stay healthy - Bob.

[lizzziep]

I’m starting Rux soon, so very interested in your reactions to it. Hope all goes well for you.

[Blackroc]

I’m glad everything is going well. I’ll be interested in your progress. I’m in Ireland and Rux has not yet been approved for PV but hopefully, now that it has been approved in England, it will soon.

[ainslie]

Congratulations Bob, I am on Rux 6 years for PV and doing really well on it, 5% get shingles so watch for that, I am getting the Shingrix vaccine next week, it’s very effective.

There is some evidence now that Rux might also have disease modifying ability for some.

Yes but it can put a bit of weight on if you allow it, exercise and chuck the cookie jar helps.😀

[AirconBob in reply to ainslie]

Had Shingrix jab a couple of years ago, so hopefully if I do get it, it won't be too bad. Oddly the wife got Shingles last week! (must be sympathy) luckily again not too badly.

Take your point about the cookies, already put on a bit but will try to 'keep the lid' on it...

[hunter5582]

Great news! Thanks for posting your experience with RUX.

[Fuzzy_Duck]

Looks like I may be switching from HU to Ruxolitinib in the near future. Got left a message from my specialist this week regarding my BMB results (all good). He said due to my enlarged spleen they may switch me to Ruxolitinib. I have a face to face appointment in a couple of weeks and it will be discussed then.

[AirconBob in reply to Fuzzy_Duck]

Certainly working well for me. I was told if it didn't work out I could always switch back or try one of the other options. Hydroxy worked when it was the only option, but I think the newer treatments are more directed, and do not carry such significant side effects. Hope it is approved for you and works as well as it is for me.

[Cja1956]

I was on hydroxyurea for years for myelofibrosis. They switched me to jakafi in June as I became considered me pre-transplant. My symptoms have improved so much that now the transplant dr is saying it can wait. I’m very happy with the results so far.