I am hoping that people here can give me the benefit of their experience of switching from hydroxycarbamide to ruxolitinib.
I had a consultation today with Prof Mead at the Churchill hospital Oxford and he is suggesting that such a switch would be a good move.
Any feedback either positive or negative will be very welcome.
Thanks in anticipation.
I have had PV for sometime and had a lot of initial problems with hydroxy (awful mouth ulcers, fatigue, night sweats etc) and eventually ended up on Ruxi which has been fantastic. I’m now living a more or less normal life with very few side effects (shingles once) and much improved energy levels. I’d recommend it but everyone is individual and it will depend on how you personally respond to it.
Thanks for this. I guess if it doesn't suit me I can revert back to HU - but I'd rather not!
I've was on Hu, then IFN then Rux. So I don't know on the direct transition from HU to Rux. So far Rux has been the most boring of the three, a good thing in this context. Are your counts currently good? If so then Rux just needs to hold that.
Rux offers the possibility of reductions in the Jak2 mutation, as does IFN. Has your Dr said why the suggestion to switch? I agree I feel it is a good move.
I see you've had the Shingrix vax, that is good for anyone and esp Rux pts.
My counts are fine - if a little on the low side at present.
I got referred to Professor Mead because of the onset of breathing difficulty and increasing skin problems.
So far, nobody has come up with any massively concerning downsides - which is encouraging.
From this forum, the most common complaint is weight gain. Skin remains a risk with Rux, it's possible previous use of HU is part of that. So you'll want to continue the regular skin checks.
Another risk is Shingles for which the vax should be helpful.
These three are what we hear about most often here for PV. I've had increased hair growth since starting Rux.
Did your Dr also discuss IFN? It also has very good benefits, while its side effects are more variable with uncommon worst case risks being more severe.
Weight gain I can live with - I'm ten stone ringing wet at present.
I brought up the subject of IFN but Prof Mead suspects my breathing and skin problems of being inflamatory and that IFN might make them worse.
I agree on the wt gain, losing as I've had with medical troubles, is my greater fear.
I see that Prof Mead is an MPN specialist. Great to have an expert watching out for you.
I was on hydroxyurea, which I think is HU. I had severe itching, despite light therapy and antihistamines. I was taking g Atarax 3-4 times a day. Anything in the air that I was allergic to made me itch. The slightest warmth, esp with exercise, made me itch and feel like needles were stuck in me. Once I got on ruxo, I felt a tremendous difference. Itching went way way down. The only downsides are that in the US, Jakafi is very expensive. Also, even though I take only 5-10 mg a day, the drug lowers my resistance to infection, so I get bronchitis twice a year instead of once.
Yes, Rux is very expensive.
You may buy Rux 20mg and split the tablet to half of quarter to safe the cost.
Enroll Rux program for Buy 1 box get 1 box free, will safe 50%.
Total you could safe cost at up to 87.5%.
I do this way as advice by doc, despite my insurance pay all of the cost.
Cheers
Thanks. Luckily because of new legislation, there’s a cap on Medicare rx $. The cap is even lower next year! It pays to get old.
I have PV and didn’t tolerate hydroxy well. The switch to rux went seemlessly with more stabilising reaction of my bloods. Good luck to you. Hope it proves a good switch for you.
Thank you
When I was switched it was immediate. I'd been on hydroxycarbomide for 2 years, then after a haemo appointment started ruxolitinib the next day. No gradual change over.
Carol
Hi. I have recently moved from hydroxy to Rux so I am still being monitored closely to see if the dosage needs adjusting - currently on my starting dose of 2 x 10mg tablets a day. I got on ok with hydroxy but my white cells were uncontrolled and were very high despite how much the hydroxy was increased. I did start to notice some more side affects with hydroxy as my dosage increased to 1000mg per day. My sleep was really very badly disturbed, I felt I was waking every 5 minutes throughout the night and would be wide awake. I had other symptoms too but they may have been more related to the high WCC - inflammation around the ankles, pressure urticaria, very bad itching. I think I did one week taking both hydroxy and rux together and then another week or so of just rux before my first blood test. Noticed I could sleep well the moment i started taking the rux and I realised I hadn't dreamt for the whole time I was on hydroxy. My WCC immediately went down to just above normal levels but my platelets have started to creep up a little but were still in the normal range last blood test - I have another today and an appointment next week. If my blood levels hold, then I am really happy I changed to Rux as so far it is doing what we set out for it to do - lower my WCC. I wish you luck with whatever you decide to do, speaking from personal experience it was hard to let go of a medication I knew and understood and make the leap of faith to a different one but within 2 weeks I had forgotten about it. I was advised to have the inactive shingles vaccine before starting the Rux (I had the first dose a couple of weeks before and the second dose after I'd started).
Good luch
I was on Anagrelide and changed to Rux, changeover was gradual, taking both for a few weeks then just Rux. I feel fine on it, although I know everyone is different. I haven’t had trouble with my spleen since being on it, but I am still anaemic. I also have EPO injections twice a week. I feel tired but that’s a combination of anaemia and age! My counts except for red cells are in normal range. Hope all goes well for you.
After 9 years on Hydroxy I changed to Rux 6 months ago. Apart from a recent slight setback I have seen a steady improvement in all counts and symptoms. Even if it does not work for you you can always swap to an alternative.
Good luck. I’m about to make the same change. I’m currently on HU alternating between 1500 and 2000 mG per day. I now have MF with no major physical symptoms except for some minor itching from time to time. I hope it goes well for us both.
74 year old NZ male, switched to Ruxolitnib after 10 years of HU. Things got better immediately. Severe night sweats stopped, started putting weight back on after having lost weight over previous 3 years. 2 years later no noticeable side effects, Vaclovir also seems to help with potential side effects.
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