Fatigue

Having awful PV fatigue last couple of days ... have had them many times but sometimes days like these I force myself to do something, anything to move but need to sit after 10 , 15 minutes and then don’t want to get up. It’s awful ... I hate the feeling... the fatigue feels deep deep deep!!! Just wanted to post this ..... anyone else feeling this these days???

[tifftriesit]

Yes. I get this way too. I’m only 42 and had to quit 20 years of teaching because of it. Then I get Depressed because of it all. I’ve always been a cheerful person on the outside and I’m finding it more difficult to stay positive for others.

[mark382]

Yes, been feeling like that for weeks. I sleep most afternoons and can't wake up. I'm so tired my body hurts. I havev to get up to do things as my wife had a slight stroke and have to look after her. Blood test this week, haematologist appointment next week. I was 1% off a venesection in January, so hopefully they'll do a venesection this time🤞🤞🤞

[john0084]

I don't know if you're able to but there's some 20minute youtube workouts that can help if you're feeling sluggish.

[hunter5582]

Have also been feeling a bit more of fatigue lately, but not as bad as you describe. Mostly just pushing through it, but is bothersome. It is part of what I am considering in looking to change my treatment plan. how is that going for you? Any progress on accessing a different medication regimen?

[Hidden in reply to hunter5582]

Hi Hunter.... no change yet... just getting weened off the Prozac we tried for the pinching/itching, have a more extensive blood test to do tomorrow then appointment with my hematologist next week when we will talk about next course of treatment. 🤷🏻‍♀️🤷🏻‍♀️. So at a standstill right now. I take 500 mg hydroxyurea every second day (since sept 2020). Hopefully something will happen to make a difference.

[hunter5582 in reply to Hidden]

I hope you are successful in accessing Jakavi ASAP. It really is the logical next step. I do not know of any better options for control of the pruritis. I don't think HU would help with this problem. Hope you get answers soon.

Meanwhile - the only other thing I know of is a topical called Eucrisa. I use it for eczema. It is very effective. My dermo-doc says it would also work for pruritis. It is an ointment, so you can only use but so much practically, but it does help.

All the best my friend.

[Hidden in reply to hunter5582]

Thanks so much Hunter... I’ll try the Eucrisa ... if I can at least get a little relief with that on my limbs it’s definitely worth a try! Thanks again !