Fatigue and Hydroxy

[Shadowperson]

My doc tells me that fatigue is a common side effect hydroxy. I usually nap 1-2 hours during the day. Because I have REM sleep behavior disorder, its an issue I am still working on.

[Mtnlife]

Golly, I was just going to post on the same topic. I started hydroxyurea several weeks ago, 500 mg once a day. Last week the dose was increased to 1000 mg MWF and 500 the other days. The days I take the higher dose I notice more fatigue. Also some facial flushing. Best regards, Beth

[AirconBob in reply to Mtnlife]

Been on Hydroxy for nearly 10 years. \i usually sleep for around an hourearly afternoons if I am not busy, but my wife reminds me that I've always done that when possible. I usually feel better when I awake and don't feel tired for the rest of the day.

[tracey13 in reply to Mtnlife]

Hydroxy worked ok for two years on my husband with PV .However, he ended up iron deficient which is what hydroxy does .

After two years my husband on his knees with hurrendous fatigue . His bone marrow biopsy showed primary MF .

He's now on ruxolitnib and it's been a life changer.

The fatigue has now gone he does get tired by 9pm which is acceptable . He has a much better quality of life now .

Tracey

[Shadowperson in reply to Mtnlife]

I also have itching from the hydroxy. I itch from the chin to just above the eyebrows. its not too annoying and lasts for just a few minutes and it is gone.

[saltmarsh]

I've been on hydroxy 18 months now and currently taking 1000mg/day. I start early, walking my dog and then on to projects or a bike ride, etc. Anyway, I'm pretty shot by 3 in the afternoon and find laying down for an hour or so really helps. Don't know if it's age (76), active lifestyle, MPN or hydroxy. I don't think my afternoon fatigue is any worse with hydroxy but I find that rest time is pretty important or else I really start to fall apart.

Hydroxy dosage is patient centric. I was on 1500mg/day and could not tolerate it but no problem at 1000. My hematologist expressed to me that every individual is different in how they react to this drug and dosage should be tailored to the individual's tolerance, needs, etc.

So far the reduced dosage has been working for me. I'm guessing your body needs to adjust hopefully with minimal side effects. It is a nasty drug but I'll stick with it for now. Hope you can also. Wishing you the best

[TLJ-1]

Well, I seem to have stabilized blood counts with my adjustment to 1000 mg/day of HU. I, too, find that I am ready to do a face-plant in my plate as I sit for lunch anytime after noon. I am pretty worthless for any physical work or mental work requiring concentration from around 11 AM until after 3 PM. A 45-60 minute nap after lunch is necessary to make it through the day. However, some of you seem to have adapted to this better than me. I yearn for my life a year ago when I did not have any need for a nap, and we could go for an all-day hike or bike ride. Especially in the time of year with fewer hours of daylight, I feel like I am tethered to home and can't go far. Personally, I think it has more to do with the cytokines (especially interleukin 1-beta) induced by the MF than with HU, and there is nothing I'm taking that combats the cytokines.

[Vtr1000]

hi Shadowperson, I took hydroxy for a year. As the dose increased the fatigue became quite bad to a point that I’d need to sleep 1-2 hours during the day. In the end it was decided that the side effects outweighed the benefits so it was agreed I’d stop taking it.

[Shadowperson in reply to Vtr1000]

You are fortunate that you can stop taking it. Hope you are seeing your doc regularly.

[Vtr1000 in reply to Shadowperson]

Hi Shadowperson, I do see my Dr regularly. I'm now using pegasys, which agrees with me better.

[Mirror368 in reply to Vtr1000]

What dosage of Pegasys are you taking? No side effects at all?

Eileen

[Vtr1000 in reply to Mirror368]

Hi Eileen, In the beginning I started with 45mcg per week. The following day I would have a headache and extremely tired by the afternoon. I increased my water on meds day and this resolved the headache, the tiredness gradually disappeared after 2-3 months. My dose was eventually increased to 90mcg per week. The tiredness returned, but not as bad. Again this disappeared after a while. It’s now working to well in bringing my numbers down so I’m currently on 90mcg every 3 weeks with a follow up in May and then see which direction I go next.

[Shadowperson in reply to Mirror368]

500 mg of hydroxy urea daily; 1000 mg ev other day.

[Shadowperson in reply to Vtr1000]

good to hear a success. I never heard of pegasy until I was referred to this site. Learn more every day.

[Shadowperson in reply to Vtr1000]

I cut my nap time back from afternoon and morning naps of 60 minutes each to just a morning nap of 60-90 minutes. I still struggle to go to sleep at night but I have a white noise machine of a bubbling brook and a CD of sounds of the forest to help; it helps.