starting hydroxy as pathway to Rux

[Sanga]

hello

I’m 58 and diagnosed with PV 8 years ago which was managed up to October 22 with aspirin and venesection. My platelets and white blood cells started shifting so my haem consultant put me on interferon which controlled my blood beautifully.

it took me a couple of months of flu symptoms and settled in well until last Easter when I started to get bad fatigue and flu symptoms and head aches and felt generally unwell. I also started showing auto immune markers. So my harm suggested I stop in dec 23

Since then all those symptoms have gone and I’ve returned to my usual PV ones which are definitely better. But almost immediately my bloods were not good.

it’s been suggested now that I try Rux but in uk I’ve been told I can only do it as a pathway from hydroxy and NICE guidelines say if I’m not tolerant to that.

Anyway my haem is suggesting I go on hydroxy fir 2/3 months and switch to Rux as she’d like me on Rux as it’s showing good results for PV.

Wonder if anyone else has advice or similar experiences ?

Thanks

[ainslie]

what your Haem is saying is likely correct, firstly it’s a good idea to get on Rux, I am on it 6 years for PV, no side effects and bone marrow looking very good, all counts inc LDH excellent, I also could tolerate Peg. I got Rux because I could not tolerate Peg and was deemed unsuitable for HU due to history of skin cancer in family and extreme itching etc.

So it may be that you have to “fail” on HU before you get Rux, the main reason is probably because Rux is still expensive and HU costs pennies. Be persistent, it took me a lot of effort to get Rux but it’s worth it.

[Sanga in reply to ainslie]

Thanks for that reply and helps steady me in my decision and haematologist advice.

Good to know you had same intolerance as felt a slight failure

Think my harm is very keen to get me to rux as she says 2 months only which is positive.

Sanga

[ainslie in reply to Sanga]

good luck, Peg/Besremi is great for many but the drop out rate depending on which doc you ask is 30-55% over time, its worth trying though. No slight failure, a tryer is a winner

[LIGEBA in reply to ainslie]

ainslie can I ask why the high drop out rate for those on these drugs? Is it the side effects?

[ainslie in reply to LIGEBA]

Yes unfortunately

[EPguy]

I've had similar in using all three drugs, but in the order of HU, IFN, Rux. All three worked on blood counts. I had a severe autoimmune reaction to IFN as you may have seen.

What auto immune markers did you see?

[Sanga in reply to EPguy]

Thanks for your reply. Unsure what autoimmune markers. My GP said my bloods showed generalised low autoimmune markers. Haem is referring to rheumatologist. Are there other tests I can ask for ? GP said they’re hard to diagnose and did a chest xray due to breathlessness.

[EPguy in reply to Sanga]

You're right A-I can be vague but it can be devastating at the same time. Breathlessness of course can be from many causes. A-I is just one possibility. I've had extensive lung tests from my A-I complications.

Here is my extensive list of all A-I and related tests I got:

healthunlocked.com/mpnvoice...

I was positive only for SS-a, Sjogren's, one you especially don't want to catch but is listed on the IFN label.

It's possible your heam or GP has saved you from a risk of a grave outcome if Dr considered it worthy of discontinuing. "started showing" does suggest the A-I markers correlated to the IFN. Most Drs still are not looking closely for this. Here is my experience of a rare worst case outcome that can be related to IFN use hence why we need to care:

healthunlocked.com/mpnvoice...

Your bad fatigue and flu symptoms are known with IFN and alone not usually related to irreversible conditions, but the A-I can be. Good thing is you apparently stopped in time. Some pts restart at lower doses with close monitoring but if your Dr is not with that it suggests Dr considered the risk too much.

I'm doing fine for the MPN on Rux and even had my mutation continue decreasing.

[Sanga in reply to EPguy]

Thank you for an extensive list and information. I tested negative fo Sjogren's which I asked to be tested for.

[Scaredy_cat]

I had ET with progressed to MF. I'd only been on aspirin until the MF and then started Ruxolitinib. The rules may be different for MF.

[user2021a]

I have PV with raised red blood cells only. Very limited effects other than having blood clots in the veins in my liver which are the ongoing cause of all my issues. Venesection working but getting more regular and getting more fatigue from low iron. Was told to ‘try’ hydroxy with a view to being put on rux. Have ‘tried’ hydroxy. Found it made me very tired, constipated, some headaches and tablets are big and I was getting really bad heartburn at the point I felt like they were getting stuck on the way down. I’m going in a week to decide on peg or rux. I’m still a bit undecided. Currently thinking rux but it changes daily. It’s a case of which is the lesser evil and it’s a big decision. I found you don’t have to try very hard on the hydroxy - it’s box ticking exercise to get to what is the better but more expensive treatment

[Innessant]

Hydroxy urea has been great for me (3 years)and is correctly the first in line defence. Give it a go.