Hydroxycarbamide

[Ipheion25]

Hello all,

I’ve just joined MPN Voice after reading the many helpful comments.

I’m 83 and was diagnosed with PCV and Jak 2, last July following a stroke caused by high platelet levels.

I’ve managed well on the Hydroxycarbamide plus a small aspirin ever day since then, apart from the fatigue which seems to be a common side effect. I’m also very anaemic. My platelets have come down from nearly 900 to just over 400. I had a bone marrow biopsy 3 weeks ago and am awaiting the result. For the past 3 - 4 weeks my dosage has been increased to 500mg every day and double that on one day a week. Since then I’ve felt pretty awful, including very disturbed, almost hallucinatory dreams. I still make myself walk 2 miles a day though much more slowly now. I am wondering if this is due to the illness progressing, the increase in the dosage and/or whether the composition of the Hydroxycarbamide has changed - the tablets are noticeably different in this current prescription. I know many people on this site are suffering considerably more than me and my heart goes out to you, especially when I see how young some of you are. I would be grateful for any responses and eagerly await your replies - when you have the time and the energy to post, of course!

With my very best wishes,

Ipheion 25

[hunter5582]

It sounds like you are experiencing some significant adverse effects with your current HU dose. While not common, the hallucinatory/dream disturbance you report has been reported by others. This is something you should report to your MPN care team.

It would be helpful to know your iron levels to distinguish iron deficiency anemia from the anemia that can be a HU adverse effect. Note that anemia can cause fatigue and the HU can cause fatigue in the absence of anemia. Of course, the MPN can cause fatigue as well.

Do not worry about the different appearance of the capsules. The generic manufacturers do not all use the same colors. A very small number of people have reported some different responses to different brands of HU, but this is not common.

Wishing you all the best.

[Ipheion25 in reply to hunter5582]

Thank you SO much for your response. Very much appreciated! I wish you all the best too and good health always.

[Mazcd Partner MPNVoice]

hello Ipheion25, welcome to our forum. I am so sorry that you are experiencing fatigue, it is a really horrible side effect and can be caused by the ET and also Hydroxycarbamide can cause fatigue, we have some information on our website about fighting fatigue, it might help you mpnvoice.org.uk/living-with... plus an information leaflet you can download mpnvoice.org.uk/wp-content/...

It would also be a good idea to speak to your haematologist or your haematology clinical nurse specialist about the fatigue and also the hallucinatory dreams you are having.

I also take Hydroxycarbamide for my ET, I have been taking them since 2008, and have them in different colours, sometimes they are white capsules, sometimes they are the pink and green capsules, it depends who makes them.

Best wishes, Maz

[Hopetohelp]

definitely worth mentioning symptoms to your haematologist, especially the dreams. I hope you get it sorted and good luck with bone marrow results

[Ipheion25 in reply to Hopetohelp]

Dear HopetoHelp,

Thank you for your reply. I’ll be seeing the haematologist in early April and have just found out will get the biopsy results then.

All the best,

Ipheion

[saltmarsh]

Sorry that you're not feeling well these days. I'm 78 with PV for 5 years and have been taking HU for 3 years; 500mg 3 days and 1000 the other 4. I don't know that it truly makes a difference but I take mine at mealtime with lots of water which seems to help. The previous posts are spot on regarding fatigue and anemia. A few years ago I had a bout of anemia largely due to my doctor dropping the ball. A new doctor and iron pills hugely helped me. Currently I still take 1 or 2 a week - counterintuitive but it works for me. Hopefully your body will adjust to the HU dosage - it may simply be too much for you. My numbers are all good. I lead a pretty active life - just back from a bike ride - and I was absolutely miserable during that time when I was dealing with the anemia so I can appreciate how you're feeling. The good news - it can be addressed.

Very best wishes. With the right doctor I think you'll get on top of this.

[Ipheion25 in reply to saltmarsh]

Dear Saltmarsh,

Thank you for your very detailed and helpful reply. I have always been a long distance walker and cyclist and although my distances and speed are greatly reduced I am determined to keep up my 2 miles a day.

My consultant told me that iron just gets gobbled up 🤣 but I shall raise this again at my next appointment.

All the very best and stay well!

Ipheion

[Lemonverbena]

hi ipheion25,

i have taken hu for 15 years with doses up to 2g (4 tablets ) a day. agree dreams but i have always used a german make that is in plain white capsules and minimal ingredients- your thinking it could be other ingredients could well be true. they once sent bright pink and black capsules. why have to process colourants if you dont have to?

i would raise it when you get to the bm results. i am happy to send details of make etc if wanted.

hopefully once platelets below 400 they might try easing the dose.

good luck sp

[Meatloaf9]

Hello young man, I am 75 PV for 8 years now and on HU for the last 4. I seem to tolerate HU better than most on this forum as I mostly would not know I am taking the med. I sometimes get tired but don't know if you would call it fatigue. I do get tired/fatigued every Jan and Feb and then start feeling better again starting in March and feel ok until the next Jan/Feb, I assume it is SADD since it comes and goes on a regular annual basis, might be something to consider.

Your BMB should tell you a lot about your MPN and if it might be causing the fatigue. Please let us know how it turns out. Best to you always.