Ruxolitinib

[Badger1]

Hi all after being diagnosed with pv for 11 hrs taking hydroxicarbimide and having phlebotomy the last Yr and a half treatment hasn't been working so ruxolitinib was put forward 4 weeks ago so been taking for about 3weeks or so blood levels have fallen spleen pain has eased but haven't felt great with various symptoms can any body tell me of their experiences starting ruxolitinib also can people say how long have they had polycythemia TIA 😊

[EPguy]

My PV Dx was in late 2020.I have been on HU, IFN and Rux. Rux for ~18 months. I call it a boring med, no sudden surprises. All three meds kept my blood counts well.

Are your blood counts all in range now? Rux can take a while to stabilize them. What symptoms are you suffering? I don't have any I would connect to the Rux other than mild weight gain starting a few months ago.

[Anouchka]

my only “objection” to tux are its side effects : fatigue and a lot of tingling in toes and legs. Diagnosed PV two years ago and taken off HU as it did not agree with me.

[Innessant in reply to Anouchka]

what do you mean "did not agree". Can you be clearer please?you seem to still have side effects.

[Anouchka in reply to Innessant]

I was feeling dizzy and had difficulty lay walking up stairs and slight inclines. The side effects I quote per to be more related to PV than the meds, other than nausea. Am g going fora second opinion this week …

[Innessant in reply to Anouchka]

Thanks Anouchka, Good luck with the second opinion.

[MCW22]

The only significant side effect I got when I first started rux was dizziness for a couple of days. Now it's just wind and plenty of it. 🤭

[Loubprv Volunteer]

morning! I ve had PV for 16 years. Was on hu for 15 + years, then interferon for 3 months which didn’t suit me at all. I like Rux, feel good, seems to be doing its job. Yes lots of wind. Family and friends are used to me and think it’s a hoot - my husband says at least he knows where in the house I am……..😁 Hope it works for you. The numb tingling toes is more likely a symptom of PV - I ve had that for 3 years.

[ainslie]

what symptoms have you noticed since starting Rux

[sbs_patient]

I was diagnosed with PV in 2015, treated initially with phlebotomy, then with HU (initially 500 mg/day, then 1000 mg/day). I developed serious allergic reactions to HU so dose was reduced, but phlebotomies became more frequent. I eventually saw a MPN specialist who shifted me to ruxolitinib in August 2022 (initially 10 mg BID but due to anemia, dose reduced to 10 mg/day, now 15 mg/day). My only serious side effect has been an exacerbation of the constipation that I'd been dealing with for decades (IBD).

[Sewingtime]

I was diagnosed with PV in 2021, started on HU but I had terrible PV itching and HU did nothing to help with that so I moved to Rux after about 3 months. Itching was gone overnight, but it took a few months to get the dosage just right to get blood counts in the right place (fro last 2 years have been on 5mg in am and 10 mg at night), as my initial dosage reduced blood counts too much, but it has been a miracle for me, and my allele burden reduced dramatically (from 60% to 25% between 2021 and 2023). I haven't had any side effects from Rux and no weight gain. Good luck, I hope it works well for you too!

[MWxxxx]

Hi. I have been on Rux since February this year after Hu failed to control my WCC. Rux also struggling to control WCC. I have PV and diagnosed in 2017 although blood tests were showing high WCC back as far as at least 2012. I feel loads better on Rux than I did on HU but I am having to take regular iron tablets (prescribed by Haematology). Only problem I am finding is spontanious bleeds. I have now had 3 which is a worry and something that didn't get with Hu, despite my blood levels being similar with platelets and red cells in the normal range. I didn't feel great the first couple of weeks of taking Rux but I was also transferring from Hu and was taking that too, so it was a bit of a double whammy and my body felt like it was suffering until I finished the Hu. Good luck - I hope you get good results with Rux

[tracey13]

Hi welcome to the group,

My husband has had pv for 8 years and post PV for 4 years .

He was initially on phlebotomy then after 2 years went onto hydroxy for 4 years then he was so ill it absolutely drained him his iron was so low he had no energy at all.

He's been on ruxolitnib for 5 years now he's had no side effects his spleen has reduced and nearly all of his bloods are In normal range now .

Tracey

[sydunipete]

After 12 years on HU (final dose 2000mG per day) I recently change to Ruxo.

I had no side effects at all from HU except for some itching.

7 weeks in and it’s a roller coaster ride. I’ve had really tender gums, a bad case of the runs, constipation, super oily facial skin. All these seem to arrive then a week or so later vanish, soon to be replaced by the next one. As long as they remain temporary then hopefully things will settle down. The only constant has been some increased gas and darker urine no matter how much water I drink.