Is there anyone out there who has been on Ruxolitinib for some time, and who has PV?i have been taking hydroxicarbamide for 5 years, it suits me well and the PV is well controlled combined with regular venesections.
I have problems with pruritis ( although I can cope it would be nice to be able to shower and bathe again, and get dressed without the dreaded prickle and itch!)
I have the chance of possibly going on the Ruxolitinib trial, but am wondering of anyone out there has noticed/ suffered side effects.
I really don't want to risk moving from hydroxicarbamide ( no side effects for me) only to find I suffer side effects with Ruxolitinib - just to cure pruritis.......
Any feedback would be gratefully received.
Meanwhile, Happy Christmas to all, and here's to a great and healthy new year for us all!
Louise
xx
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Loubprv
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Hi Louise - Toss of a coin decision maybe ..... The Rux may mean fewer venesections , thankfully I haven't had to have one. . but my advice would be to stay on the HU for now if you tolerate it well as although the Rux may mean you can take a shower - as I can now after 8 yrs - you may experience other unwanted effects. Knowing what I know I would say to you give it a little time and maybe learn from the experience of a few peops with PV who have little or no choice but to take Ruxo as their next stage. . Of course if your spleen is massive and your PV affects you in other ways then there is a greater argument to give it a whirl.
I have been taking it 6mths for MF and it upsets your tum a tad, can lower platelets as in my case, and it can lead to weight gain as your appetite improves which I don't mind., and doesn't always decrease your spleen size. On the plus side the showers / bathing is brill, the appetite is good and the burning up is reduced.
Still a tough one. The cost of the drug may prohibit you being put on it unless your Hem thinks you need it.
I have MF and have been on 15mg twice a day Ruxolitinib for about 18 months now and absolutely no side effects that I have noticed. My spleen is now normal from being very large, night sweats have gone and it does ease the itching but it comes and goes and I control it with over the counter anti histamines. I started on Hydroxicarbamide and took it for about 4 months and it did no good for me.
Hi Louise; I have PV and was on Interferon for 25 years until 9 months ago. During the last 18 months of that I also went on to Hydroxycarbamide as my HCT was going above 45 but the latter caused an ankle ulcer which took many months to completely clear.
I was invited to go on the Majic trial with Ruxo (they are still looking for patients to go on the trial) 9 months back and for me, it has been very good. My statistics are more stable and the itching has almost gone completely. It does, however, lead to weight gain but apart from that I have not had any adverse side effects other than a couple of days tummy upset when I increased from 5mg to 10mg twice per day. And what a great blessing it is not to have to inject!
I'm going to have a chat with my haemo, but to quite honest, I feel really well, I'm not keen on putting weight on having lost two stone, replaced my wardrobe and am now a trim 8st 7lb which is ideal - feel fitter than I have done for ages!
I don't have an enlarged spleen, and other than pruritis I really am ok.
Think I might wait until it's licensed in this country, or, things take a downward swing and I deteriorate!
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