On hydroxycarbmide

[Holly2021]

Hi been on this medication for 4 years now and I’m finding with time I seem to have more health problems I’m jak 2 pos ET but I’m told the my low sodium is not a side affect of this treatment had a scare 2 week ago when reading was 128 ! I tend to go up and down with each blood test but they wanted me to go to A n E to go on a saline drip but I refused because of Covid rife in uk hospitals so can anyone please tell me why I have low salt in blood many thanks Hollie

[GK40]

Hi. I've been on hydroxy for a few months now and have had more health conditions arise in these 2 months than in my 41 years. However, my consultant says it's not related as no one else he supports suffers from 'side effects'.....I do think its related and am seeking advice from elsewhere! I'm et triple negative

[Holly2021 in reply to GK40]

Yes it does seem to me that all haematologists seem to be same regarding side effects ! The fatigue one especially and like I said low sodium I’m going private regarding the sodium issues because NHS outpatients long wait ! Hope you also get some answers regards Hollie

[Hidden in reply to Holly2021]

It is all too easy with any long-term condition and its treatment to blame most health issues that follow as somehow being caused by one or the other.

mayoclinic.org/diseases-con...

[Tico]

Well I certainly don't agree with what you've been told and I have been told by my Gp and my Haematologist that this could be why occasionally my sodium levels go extremely low and I have to take Sodium Choride tablets for a while until they return to normal. I was also in Hospital during the first lockdown with a chest infection and again low sodium and the Consultant stopped the Hydrea while there because of it. Tina.🤗

[Holly2021 in reply to Tico]

That’s right I think so too Tina !! Thanks for your input !! Regards Hollie

[hunter5582]

While it is not common, Low sodium (hyponatremia) is one of the known side effects of hydroxyurea (hydroxycarbamide). This has been reported in the literature.

"Hydroxyurea, an orally active agent used mainly in the treatment of patients with chronic myeloid leukemia, also has been implicated as a possible cause of hyponatremia secondary to inappropriate secretion of antidiuretic hormone."

ajkd.org/article/S0272-6386....

Bear in mind that HU can cause renal impairment. This is a common side effect. Not to say that is what is going on in your case, but it should be checked out.

online.epocrates.com/drugs/... ..

drugs.com/monograph/hydroxy...

We really can't answer your question other than to say it is possible that the hydroxycarbamide is involved. If your hematologist is unaware of the fact that side effects from HU are actually quite common due to its toxicity then perhaps a second opinion is in order. Here is a list of docs with MPN expertise. online.epocrates.com/drugs/...

The good news is that there are other options if it turn out you cannot tolerate the HU. I am one of those who also could not tolerate it. Some of us can't. Others tolerate it better. You will need to figure out how your body is reacting.

Hope you get it sorted out soon.

[Holly2021 in reply to hunter5582]

Thank you so much Hunter . I’m in the uk and will be going private for diagnostic tests to try and find out if HU is causing this low sodium I been at my wits end with trying to help myself I measure my fluids intake now and I’m allowed 1 .5 litre and lowered a med I take that can cause low sodium but yes Drs here do not seem to have much idea of what HU does it is one of the cheapest drugs to take I believe regards Hollie

[hunter5582]

You are correct about cost being what drives the formulary for medications. HU is much cheaper than PEG-IFN or ruxolitinib. Doctors are under considerable pressure to prescribe cheaper drugs in many healthcare systems. It goes back to the core principle that assertive patients receive higher quality care. Passive patients do not. If you are having problems with tolerating HU, then you may have to really assert yourself to change to something else.

Hope it all gets worked out ASAP.

[Holly2021 in reply to hunter5582]

Thank you Hunter ! For all your advice

[Kelly2 in reply to hunter5582]

You are invaluable in here with your advice! We all thank you!🌷