Dropping Hydroxycarbamide dosage

[MarkD6701]

As I was diagnosed in January I'm still learning about MPN's, their effects etc. As my blood counts are dropping I've now been told to stop Hydroxycarbamide at the weekends and take 500 mg Mon-Fri.

I just wondered if anyone has had any side effects from stopping taking it at the weekends.

Also, one thing that has surprised me about my condition is that even though I'd got blood clots my counts were not that high when first diagnosed with MPN. I'd assumed blood had to be very sticky to get the clots but obviously not!

[Inca]

I had to drop Hydroxy for a month when red and white dropped,no side effects at all,just warned to keep away from people with colds etc,as immune system was compromised,back on H Y now,counts going up .....so don't worry ,think it part of an M P N to chop and change....best wishes.

[piggie50]

Hi, when is stared hydroxy my platelets were around the 850 mark, and I took 500 mg every day, after four months they reduced to between 300 and 400 and my dose was reduced. I now take it six days per week and have a day off in Sunday's. I think it's normal for the dose to be adjusted according to blood results.

Judy x

[mol56]

I have been on Hydroxycarbamide for almost 10 years now. I have E.T. JAK neg.

My dosages have been altered many times over the years , ranging from 500mg every day to 500mg one day and 1000mg alternate days and other dosages in between according to blood results and how symptomatic I am. No side effects apart from the desired ones to make me feel better and to improve my levels of platelets and other cells.

As Inca put it, it is part of our MPN'S and is adjusted to suit individuals.

[Hidden]

Hi Mark

Strangely enough although my platelet count was above normal when I was diagnosed with ET, following my portal vein thrombosis but hey we're not astronomic!

My hydroxy dose has been changed over course of my treatment too. Last time it was reduced was due to white blood cell count dropping a bit low. I now only take 500mg Mon and Fri. My platelets count has been stable at about 330' though last time went up slightly at 350 but had been fighting shingles! There has been talk of reducing it to once a week, though did not happen last time I went.

I don't think It has created any problems. I do get night sweats and occasional itching but as I have now got an under active thyroid and that can cause these symptoms too. And as my GP is still trailing what is the best dose of the meds for that until they get it right I am putting this down to the thyroid issue.

If you do get problems with reduction in dose, or blood counts start rising too much again they can always increase it again. Think sometimes ithappens this way.

Take care, Liz

[MarkD6701 in reply to Hidden]

Hi Liz, Thankfully I'm on Warfarin as well so if the counts get too high with the reduction in Hydroxycarbamide at least I'll have a bit more protection from clots.

Mark

[Gee1]

Hydroxy nearly killed me, it certainly made my life deteriorate, glad i gave it up and went natural, particular natural / herbal remedies are the best but sadly not allowed unless your in some U.S states now

[dscotese in reply to Gee1]

Can you tell us what "natural, particular natural / herbal remedies are the best" (for you) please? When they make it illegal to treat yourself, they are overstepping their bounds. Knowledge is power!