PV and fatigue

Yes, as soon as I stopped them my platelets shot up over 600 so back on I went. They are working great keeping my numbers down but will my hair stop falling out? I will have to take them for life so I guess I have to take it day by day. There’s only one other medication for PV and it’s pretty new. It’s extremely expensive and has different side effects. This one has been around for decades and my doctor really prefers patients stay on it if they can tolerate it. Keep us posted. Good luck!

Well the main thing about Hydrea is they are keeping your blood levels under control, same applies to me & all of us on here who have been prescribed this drug. Just wish there was some natural preparation in alternative medicine that could be used. I am very much in favour of natural methods of treatment which many patients with various forms of cancer are turning to. Something which needs a lot more digging into for our condition.
With regard to hair loss, when I saw the wig that a dear friend got when she was diagnosed with Breast cancer 6/7 years ago, I was relieved to see how foolproof it was, felt one hurdle was out of the way! if my turn came around. Unfortunately I have the PV rash attaching various parts of my body & have had a few really very itchy ones in my scalp, then another stone wall loomed, a wig would not be ideal, just might irritate scalp further. 🙃 🤔

I too had hair loss on hydrea. Was switched to Jakafi after a few months and looked for hair strengthening pill - seems to be working now with supplementing with “Hair Volume”. Hope you can find same; good luck.

Usually they are checking an for enlarged spleen and if any of your other organs appear swollen. They usually order an abdominal ultra sound when first diagnosed to determine if the PV has affected any organs.

Yes they did.

Hi that's great if the Jakafi med is working for combined with the Hair supplement.
I need to check out Jakafi as I thought it was a chemo drug as well just. Probably all of the available drugs are chemo. Best of luck with the hair growth...I have very fine hair so can't afford to loose much more of it!

Jakafi is not chemo medicine as such. It is treatment targeted for PV and myelofibrosis; it keeps blood and spleen problems in check (simply put). Just thought you’d like to know. And I too have very fine hair, so I know how you feel. Good luck.

I have PV and am on hydroxide too I have been lucky so far in three years no hairloss but have very fine hair but what I am experiencing is occasionally at night I have electric bursts or raised uric acid spasms similar to hives attack does any one else have these?

Thanks so much for that. I did think I had read somewhere that it wasn't a chemo drug, then thought without rechecking it before I answered your post I had better have my facts right on case I mislead anyone without double checking first. Just as a matter of interest, you should if you havn't already done so, read the side effects of Jackifi, need to read them myself again.
Was at the clinic this am, my platelets are down from 622 on 6th June to 575, a good bit to go to get inside the normal range. They were going to increase by 1 tablet a week to 4 from 3per week
I whinged a bit! so left me on the 3tabs. Keeping a note of all visits & getting a printout of all the blood tests is very helpful for comparative purposes.
Good luck with & thanks.

I have been on Jakafi over 4 years, it was the only thing that would slow me red sounds down from forming so many. I have not not noticed any hair loss