changing medication

[Sanga]

hi

Wondering what people’s thoughts or experiences are on being on rux?

I have PV diagnosed 8 years ago and all good with venesection and aspirin only. Until my platelets and white cells started rising.

I’ve been on interferon 95mcg for a year but with horrid side effects, however kept my blood in line.

haem consultant suggested I come off over Xmas fir 6 weeks and my results have shown changes in all blood counts.

she is now suggesting I go briefly onto hydroxy fir 2/3 months so that I can try going on rux as she feels I may tolerate rux better.

readin I have to go on hydroxy first is in UK, PV patients pathway is via hydroxy as its the only research NICe have.

Anyway. Wondering thoughts from anyone ?

thanks

Sanga

[KevinJH]

Hi Sanga

I'd imagine there's more than a few on here who have had good experiences with Rux which will be good to hear. So far, for myself, that's not the case. I've had PV JAK2+ for thirteen years, twelve of which I was taking HU without problems - until a year ago when things starting going a bit awry. Various test, scans and a BMB showed (thankfully) no progression but simply that HU seemed to have run it's course for me, with platelets in particular going through the roof.

I was therefore moved on to Rux in early October last year, starting off on 2x10mgs p/day. This had little to no effect and I was quickly moved on to 2x15mgs then 2x20mgs where my platelets finally started to reduce reasonably well. However, whilst they aren't yet ideal, all other test levels are pretty good. The down-side though was that I've become anaemic and now have an 'irritated liver'. I was also having daily migraines (which I never had with HU) as well as severe muscle aches in the morning (and now evening) that usually can be controlled with paracetamol. I've therefore had the dosage reduced back to 2x10mgs p/day (which has in fairness stopped the migraines) whilst my haemo decides where we go from here. One option is to stay on a low dose of Rux but also restart taking a low-level dose of HU to supplement it in the hope that the platelets can be better controlled.

My haemo admits to scratching her head over my issue(s) and hopefully there'll be a light-bulb moment where things fall back into place. Keeping my fingers crossed.

One thing I was advised about is that whilst HU is usually the first line of defence - with Rux only having been approved by NICE for PV in September last year, it gives PV sufferers another cause for hope and peace of mind - if it can be tolerated. Depending on who you speak to (or what you read) it can take anywhere between six weeks to six months for one's body to get used to it as we're all so different.

Sorry to have blathered on so much but hopefully this'll give you just one of what must be many perspectives out there. Good luck on your journey.

Kevin

[ainslie in reply to KevinJH]

Sorry to hear of issues Kevin, I am curious why your doc halved the dose, something in between may be better. It may be worth seeing a MPN specialist to advise.

[KevinJH in reply to ainslie]

Hi ainslie

It was halved to presumably see if the situation with my liver, anaemia and the muscle-aches - all of which were non-existant on HU will improve ? Perhaps there's a hope that by being on a lower dose and giving more time to see if the body adjusts, there'll be a more positive result. I guess it's still early days - it's only been around 12-14 weeks so far - but must admit it's been a little uncomfortable to date. I do consider myself very fortunate that the haemo is the senior MPN specialist who's like a dog with a bone and been very thorough in the investigation(s) 😉

[EPguy in reply to KevinJH]

I like that idea of adding a sprinkle of HU to avoid higher Rux doses. I've thought about that if I were to need it. So far my counts are holding ok on 20BID.

[ainslie]

most people tolerate Rux very well, I have been on Rux for PV for 6 years and doing really well, no sides and all chemistry is normal.

[EPguy]

- What horrid side effects have you experienced on IFN? I assume 95 was the smallest dose that worked. It seems these effect have subsided for you upon quitting, that is great. I got the top billing of sides on IFN so had to move to Rux. IFN is really good for those who tolerate it.

I've been on all 3 of the meds, and all held CHR. Rux can take a while to give effect, but for me it's been the most boring of the 3 (a good thing) I'm on 20BID (10 2x/day).

Like KevinJH here, my PLT is more stubborn on Rux, but at ~400 ok enough. You should discuss the goal for PLT with Dr. Some try for well under 400, which could lead to high doses to get there. My MPN specialist is ok up to 600-700 if it avoids forcing other counts down too far.

Both Rux and IFN can reduce your Jak2 mutation, it probably has gone down over the year you were on Peg. That might continue on Rux, you can see my particular results here:

healthunlocked.com/mpnvoice...

[George1976]

I tried Rux and it made me feel very anxious plus it was having a hard time controlling my CALR ET so I stopped and went back to HU.