RUX for PV?

[Ginger1017]

I have been on run for a few months now. Blood tests are down, perfect right now. Still fatigued though. Ears ringing like crazy but thankful. Anyone else with polycythemia have diarrhea? I am thankful for this drug, but want to feel better

[EPguy]

I had loose stools ever since I got Covid March 2020. But I think it was the un-Dx'ed PV doing most of it. I still had it on both HU and IFN. Now on Rux I lean to the opposite. Rux can have either or both of these sides.

If your tinnitus has recently been worse it's possible this supplement could help. I have increased T since catching Sjogrens and it helps

"Lipoflavinoid"

I requires 6 pills per day to start. It's based on Vit B and lemon peels. As with any supplement it could interact with other meds/conditions.

If your T is long standing and unchanged, odds are lower this will help, but still possible.

[Ginger1017 in reply to EPguy]

Thank you

[Ginger1017]

I meant rux!

[EPguy in reply to Ginger1017]

In that case, if it started after starting Rux, you're getting the more common side as seen here from the label, 15% vs 8% for the opposite. What is your dose? If your counts continue down you may be able to decrease it.

It may also change over time, mine took many months to stabilize its effects.

accessdata.fda.gov/drugsatf...

This list is also a good reminder to be up to date on the Shingrix vax.

Rux sides

[william-Indo]

Hi Ginger,

Tinnitus may caused by deficiency vit. 12, infection, high blood pressure, sinusitis.

Look for the root problems.

Cheers

[MWxxxx]

Hi. Yes I am getting ringing in my ears. I did get it on occasion with hydroxy but i've been on Rux for 3 months now and it's noticeably annoying. Sounds like i'm in a field of crickets! Like you I still feel fatigued, maybe even more so but differently to when I was on hydroxy. I am sleeping much better and I don't have so much imflammation in my ankles so less pain in ankles and feet. I've had a couple of burst small veins which is worrying. Initially all my bloods went down to normal range but now WCC and platelets rising again whilst Hb going down and now on iron. I really want to stay on Rux, I do feel better on it than I did on Hydroxy despite still having side effects. I plan to raise the ear ringing at my next appointment.

[Ginger1017 in reply to MWxxxx]

Thanks for the input. I've had ringing for over 10 years! Possibly had pv and didn't know it? Just send worse. Was thinking once my labs went to normal the ringing would stop. Frustrating. But thankful for normal labs 🙌