The Effects of long-term hydroxyurea

[Marisolsc]

I was diagnosed in 2009 with Jack ET. My numbers were too high to start with just aspirin so I’ve been on hydroxyurea. At first I was on hydroxyurea for just a few months and then on aspirin shortly after my number spiked again and I had to on Hydroxyurea . I’ve been going back-and-forth from 1000 mg to 800 mg of Hydro Korea +325 mg of aspirin. My question is how is the Hydroxyurea affecting the rest of my body?

[Mazcd Partner MPNVoice]

Hi Marisolsc, this information on our website might help answer your questions:

mpnvoice.org.uk/about-mpns/...

best wishes, Maz

[jillydabrat]

Morning my lovely. I have been on Hydroxy for 5 years. I have no idea what the long term affects on my body will be but I do know that after 3 DVT’s and two TIA’s I am much safer on the drug than off.

[Loubprv Volunteer in reply to jillydabrat]

Hi

I agree. I’ve been on hydroxicarbamide for ten years and would have had a serious stroke without it.

I have PV.

I have noticed differences to be honest, but after all it’s a mild chemo drug and is bound to have an effect.

I haven’t a hair left on my body ( head ok so far but eyelashes getting a bit sparse - however I’m 65 so bound to happen anyway)

I have small re spots appearing, and believe it not sort of dry warty bits on my legs and back. However, I don’t shower or bathe due to aquagenic pruritis and so can’t exfoliate so probably due to that.

My memory and concentration are also not so good. Suggest you google affects on memory of hydroxi, and side effects of hydroxi.

However, we all know that not everyone suffers all the side effects - I certainly didn’t by any means, but they’re in the list anyway!

At the end of the day, I feel really well, and so have no intention of trying another drug. I’d rather put up with a few irritating side effects than try another drug which may make me feel ghastly!

Hope that helps.

Louise

x

[charl17 in reply to Loubprv]

I did fine on Hydrea until I didn't. I remember sensing that my skin was fragile. Noticed rough spots on my face, When I scratched a bug bite my skin would crumble and take a long time to heal. I ended up with a spontaneous, intractable ankle ulcer. Most people do fine on Hydrea. But it is a serious drug with serious potential toxicities. You must be alert to what is going on in your body because two GPs, my dermatologist and my wound specialist did not connect the dots. I am on Pegasys now and am doing fine with it. But Pegasys has its own side effect/toxicity profile. Another thing, you must work closely with your hematologist because only a specialist can be relied upon to connect the dots.

[Loubprv Volunteer in reply to charl17]

I agree. I have four mozzy bites that haven t really healed and are now just red spots. Thank heavens for concealer! Could be worse.

[Marisolsc in reply to charl17]

That I did notice happening to me. But I went to a holistic nutritionist and I am now on a vegan diet organic and it is making a big difference on me healing quicker.

Thank you

[stevenjust]

Hi, I was hydroxyl for about eight years, I’m now 48 started on at after diagnosed at 38. Platelets were 1300+. Most of the time I felt ok, but had bouts of fatigue, felt sick, hair was thinner, most common was mouth ulcers which were really awful. I decided two years ago to ask to come off them now my platelets were under control 500-600 mark. I expected Dr to say no but he agreed and I came off them straight away. Only once I came off them did I realise how better I felt. Currently on no medication although platelets have risen to 1300+ again. Been advised if I hit 1500 I need to go back on medication. x

[Marisolsc in reply to stevenjust]

Thank you. I am having no trouble with the HU yet. Just wanted to know what to look out for. As for getting off of it well every time my doctor agrees to lower my dosage my numbers so very quickly goes over 1.5. The last time he tried it went close to 1.8 million.

Thank you once again

[lizzziep]

I was on hydroxy for 3 years without a problem but then developed horrendous ulcers on my feet, which just wouldn't heal, finally saw a dermatologist and she said it was the hydroxy and I was changed to Anagrelide, ok so far for the last few years on that. However I spoke to a lady at the clinic, she was in her 80's and had been on hydroxy without any problems for over 20 years, so everybody is different. Best wishes for the future. Lizzie

[Marisolsc in reply to lizzziep]

Thank you

[hunter5582]

Like any other medication HU has both risks and benefits. Like many chemotherapies HU is a toxin. It interferes with DNA activity in your body - slowing down the activity of hemopoietic stem cells. It affects other cells as well. Some of the unwanted effects bear on the fact that HU is teratogenic, and potentially mutagenic and carcinogenic. That does not mean these things will happen, but it is a known risk. You have to balance these risks with the risks that untreated ET could have. Many people tolerate HU with little or no problems. Others (me included) do not.

You did not mention whether you are symptomatic due to the ET. Many docs do not use cytoreduction in patients with platelet levels below 1 million, age less than 60 - unless there have been symptoms (thrombosis (DVTs, TIAs, etc). If you are symptomatic - it needs to be addressed. If you are not and you fall into a low risk group, then sanitizing you blood cell lab numbers may not be worth the risks. That is something you have to determine with your treatment team. It is worth educating yourself about your treatment options. Here is a link to one of the treatment protocols for ET. ncbi.nlm.nih.gov/pmc/articl... .

I was wondering about the higher dose aspirin. Most folks with ET use the low dose aspirin either once or twice per day. Aspirin can have significant adverse effects when taken daily, particularly in higher doses. Perhaps there is some reason why the higher dose had been recommended. If you are not sure why you are the higher dose, you may want to inquire.

Hope you get answers to all of your questions soon.

[Marisolsc in reply to hunter5582]

Thank you. Yes my numbers were over 1.5 million when I was diagnosed. And it keeps creeping up if I don’t take my age you. With 900 mg at this time dearly my numbers stay in the 500s. As for the aspirin the doctor is using the aspirin in Lou of increasing my HU. Yes I have ET.

Thank goodness I don’t have any of these side effect.

Thank you once again

[hunter5582 in reply to Marisolsc]

That makes sense then. With platelet numbers that high certainly something would need to be done. Have you been checked for Acquired von Willebrand Disease? That would be the contrary risk - hemorrhage rather than thrombosis.

Glad to hear you are tolerating the HU. Many people are able to tolerate it OK despite the potential adverse effects. I hope it continues to be so. There are other options and new ones on the horizon.

Do be sure to take good care of your stomach with the aspirin. I have GERD/hiatal hernia and have had bouts with gastritis. Not fun! I hope you, tour stomach, and your blood cells all do well.

All the best.

[Marisolsc in reply to hunter5582]

I will ask my doctor about Acquired. And yes I truly look out for my stomach. Thank you.

[Jennytheb in reply to hunter5582]

This is really useful. I found that when beginning the treatment I couldn't take Aspirin mix (kept falling to the ground) so on Clopidogrel. I am having a totally normal life though admit have always had dry skin on say feet and this is now not good. Does anyone know how the treatment affects the immune system? Thank you for all your dittys, nice to know we are not alone!

[hunter5582 in reply to Jennytheb]

HU does affect the immune system. It is important to avoid live vaccines and to avoid infections. HU reduces all hematopoiesis - all types of blood cell production are affected, including leukocytes. It affects some people more than others, but anyone on HU would be considered to have some level of immune compromise.

[Jennytheb in reply to hunter5582]

Many thanks for this didn't want to trouble the hospital I expect they are well and truly inundated at present. Very helpful.

[CurlyKale]

Hi Marisolsc, As with everything its a tradeoff! Presumably there are risk factors which mean you need treatment other than just aspirin e.g. age, platelet count, other conditions.

If that is the case then it is balancing the risk with the side effects. If you aren't suffering with side effects then stick with the Hydroxy...it may well have effects on our body we don't like the sound of but it really is best for us.

If you are worried, then ask your haem why you need it. Once you have an explanation you are happy with and understand then you can move on with the rest of your life.

[revfee]

Hi, I would echo what others have said about risks and balances and being aware of your body and what is going on with it. We know there is an increased risk of leukaemia with long term use but the at least we are being regularly monitored.

I have PV and have been on Hydroxy for over 30 years... would rather not be taking it to be honest but have had issues with clots so consider the risks of HU better than the risks of stroke etc.

Good luck.

[Marisolsc in reply to revfee]

Thank you