Side effects

[Mandz12]

What side effects have people suffered from Hydroxycarbadmide. I started mine today

[hunter5582]

Knowing how others respond will tell you little about how you will respond. Some people experience little in the way of adverse effects. Others experience adverse effects even at even at very low doses of HU. I am one of the latter. I experienced: compromised intestinal endothelium/constipation, oral ulcers, return of canker sores, thrush, dyschromia of tongue/leukoplakia.

It is important to know that just because an adverse effect can occur does not mean that it will. We are all quite different in how we respond the HU and the other meds used to treat MPNs.

Here are some resources you may find useful.

online.epocrates.com/drugs/...

drugs.com/monograph/hydroxy...

oralchemoedsheets.com/sheet...

ethrombo.blogspot.com/2017/...

Hope your journey with HU goes well. Do please let us know how you get on.

[Mandz12 in reply to hunter5582]

I will keep you informed hope you are doing ok x

[Mostew]

So glad you found us. MANZ12. You are no longer alone

Lots of great advice and lovely people on this forum .

I am a week ahead of you taking hydroxicarbamide. So far no side effects . (Maybe to early )

As Hunter said we all respond differently.

I'm taking 500 tablet every other day ...

Blood test in 2 weeks

What strength are you taking ?

Carolyn

[Mandz12 in reply to Mostew]

500mg 1 per day they said my blood count is 1000.

[Mostew in reply to Mandz12]

Mine slightly over.i decided to try every other day and se e if platelets improve .

[Grum1]

I am on a high dose 19 x 500mg capsules per week. I am still experiencing hair thinning and fatigue after being on this dose for past 10 months ( I was on a lower dose for the previous 4 months).

[Red64 in reply to Grum1]

I take 4 x500 daily, I also have thinning hair and fatigue, and nausea for a day or so when they alter the dose either up or down. I have been on this dose for nearly 6 months now. I started on 2 daily.

[Mandz12 in reply to Red64]

Great to hear they are doing their job

[Mandz12 in reply to Grum1]

Tiredness is hard keep well

[nightshadow]

I have had the good fortune to tolerate HU well. I take 500 mg 5 days a week and 1,000 the other two which is maintaining my platelets at high 200's low 300's. I hope you end up with equally good results.

[Mandz12 in reply to nightshadow]

Me too thank you x

[Michali45]

Hi! I have been taking Hydroxycarbamide for nearly four months now, 500 mg a day and have not had any side effects at all from it. I realize that I may get long term side effects but I don’t dwell on that possibility. It brought down my platelets very quickly which was a relief. All the best to you!

[Mandz12 in reply to Michali45]

Great news, hopefully I should do well, and I don't look into the future what is is.I lost my dad to covid pneumonia last year, so it's a bit much at the minute x

[Michali45 in reply to Mandz12]

I’m so sorry to hear about your Dad. Of course you will be apprehensive about the diagnosis and treatment but I’m glad you joined this forum. Don’t hesitate to ask here about any concerns and I hope you have also been given numbers to call your Hematology team if you have any worries. I find mine very helpful.

[Ratton726]

I had a very bad skin reaction (not right away but after a few weeks).Hope you do not have any problems.

Best- Ratton 726

[Mandz12 in reply to Ratton726]

Thank you x

[Doggy1903]

Good morning, on this medication for 3 and three quarter years, fingers crossed doing very well. Platelets nicely down too. The doctors monitor you very carefully, i have blood tests every 4 months and will help in between with any problems,Eat and drink fluids well and take care. Please let us know how you are feeling.

[Mandz12 in reply to Doggy1903]

Still OK at the minute. I hope I don't have any major problems. I will keep you all informed.

[Oscarsboy]

Hi. As you will see from here everyone reacts differently, or no reactions at all. It just depends on how your body tolerates it. Thankfully I have had little side effects having now been on since August last year. I am on one daily and two Saturday and Sunday and platelets are now 387 and were 550 when started. So although I had a quick drop initially it has levelled out. I do get muscle and joint pain but not all the time and it is liveable with. I hope very much you do really well with it and that you do not have too many side effects. Some of them initially seem only to be fairly short lived. This is a great place to be to gain help and information so hope all the comments are really useful to you. All the very best with it.

[Mandz12 in reply to Oscarsboy]

Thank you for taking the time to reply x

[dabs121]

Hi Mandz12, Like you, I started HU 500mg daily just 3 weeks ago and was worried about the possible side effects, but so far, fingers crossed, I haven't had any. One bit of advice I was given was to take it with food and not with milk. I take it half way through my bowl of breakfast cereal, which I have with Alpro Oat milk, which I have used for years.

I hope it all goes well for you.

David

[Mandz12 in reply to dabs121]

Great, thank you. Hopefully, I will be fine keep you informed x

[Bluetop]

I have done well on hydroxy. I am 71 and have been taking it for 5 years for PV. I generally take 11x500mg per week, though the dose has varied over time. My platelets are usually in the low to mid 300s, but occasionally shoot up for unknown reasons. (Though I understand that this might be to do with the time the blood was taken, eg. last time I had a very early morning appointment and I think I was still dehydrated.)The side effects I have experienced are dry skin and nail problems, hair thinning (stable at present) and I am super careful with the sun. I do drink about 3 litres of water a day. Good luck with it.

[Mandz12]

Thank you. I have only been on them for 2 days, so I have not had any major issues yet . Glad you are OK thanks for your reply x

[Meatloaf9]

Hi, I am 72 and PV started out as ET 3 years ago. I have been on HU since last July. I take 8 per week, started out on 14 per week. I have had absolutely no side effects since starting the HU. I would not know I am taking it except for all the hand washing you have to do while handling the medication. Good luck to you, hope you have no side effects from this medication, best always.

[Alliswell4me_]

Hi! I’ve been diagnosed with ET for 22 years, taking only low dose aspirin from age 50 until age 61. Then I took 500 Hrdroxy each day from age 61 to 70. Then for past 2 years was not willing to continue with frequent mouth sores and overwhelming fatigue so have been on 500mg hydroxyurea every other day. This is much better for me so far as I have much more energy and very infrequent mouth sores although platelets are back in the high 400s but overall, I consider myself doing better. Like Hunter says, everyone is different in their responses and tolerance to Hydroxy and since I’m doing well after 22 years, I’m very grateful. 🤗

[givingITMybest]

Greetings, I agree with Hunter that the side effects of HU vary person to person. I successfully took it for a year and a half, but then experienced greater fatique and bloomed with skin cancers. I also had occasional mouth sores. My hair thinned, had nose bleeds and dyschromia as well. The increased fatique and skin cancers is what caused me to change medications. I'm now actually taking an experimental drug and so far so good. The side effects have been mild and my energy level is better. Your body is unique to you and you may very well go years with successful treatment on HU.

Namaste

[souplover]

I've been on Hydroxyurea for about 3 years. At first, the only side effect I experienced was fatigue from low iron levels. Recently the hematologist adjusted the HU down just a bit and that seems to help with the iron and fatigue.

However, about nine months ago I developed lactose intolerance - and then a series of other intestinal issues, a whole host of other foods that I can't tolerate either - beans, tofu, tempeh, peanut butter, many vegetables, apples. I'm actually pretty upset because as a vegetarian, most of the protein sources I usually rely on and enjoy are now out of bounds. It seems like in some way, the HU alters the chemistry of the digestive system.

[Mandz12 in reply to souplover]

Oh god, that's not good. I hope I might be one of the lucky ones x

[souplover in reply to Mandz12]

Well, as you can see, it seems to affect each of us differently. Maybe, as Hunter suggests, just see what happens, since most of it won't happen to you. Circle back here when and if you do have problems.

[CLONDARA]

Hi,I take 1x500mg Monday to Friday since October last. First 3 weeks I had a lot of nausea, fatigue and some headaches. I worked out the best time to take it was at 9/9.30pm and combined with my system adjusting I have done well since then with only slight bouts of tiredness (I am 2).

Best of luck,

Valerie

[Mandz12 in reply to CLONDARA]

I have had headaches

[CLONDARA in reply to Mandz12]

Sorry I am 62 ha ha

[mhos61]

Hi Mandz12.

I’ve taken the same low dose 500mg hydrea Monday to Friday for nearly six years. I’m very lucky that I haven’t suffered any adverse events, other than a few mouth ulcers in the early days. My platelets remain stable at 320/40 ish. Hope you have similar results, if not there are alternatives.

Condolences on the loss of your Father. X

Good luck

[Mandz12 in reply to mhos61]

Thank you it means alot x

[EPguy]

I tolerate it ok and get good response at just over 500/day. I suggest you follow your blood response closely as you get started. I required a few months to get to a good place. Assuming you get to that good place be sure to confirm your continuing dose with your Dr. I started at 1000/day and by month 4 I felt terrible, just general malaise, which is my main symptom on any bad day. At 500 it's not as bad.

Note also your Dr should be discussing hematocrit, WBC hemoglobin, etc if these are not in order at the start of therapy. These, in addition to PLT, are usually affected for better (if you need to reduce) or worse (if they get too low) as you track PLT with hydrea

In general don't be afraid to ask about dose adjustments.

[Mandz12 in reply to EPguy]

Thanks for that information x

[Kari1961]

I've been taking Hydroxy for two years, initially 500mg per day, and now - 500mg x 4 days, 1000mg x 3 days. I tolerate it well, and it has really helped to stabilize my PV.

However, when I first started taking it, I'd say for the first 3 months I experienced a few side effects. The worst of which were a sore mouth/tongue, very dry eczema behind my ears, fatigue and constipation.

I was prescribed a mouth wash (I can't remember the name of it) and an emollient, which helped.

It was very strange, but almost 3 months to the day of starting on it, I woke up one morning feeling perfectly 'normal' - the eczema had even cleared.

I make sure to drink 2ltrs of water daily (which I believe helps) and I also take a magnesium supplement daily which has helped with the constipation - I spoke to my Haem about taking it, and he confirmed that it would do no harm.

Hope it goes well for you. Kari

[Mandz12]

Some thing positive to look forward too x thanks for your reply x

[Ruthie13]

I am on 500 once a day. I have had no side effects since I started about 2010 after a CSVT. My platelets are about 300. So all fine so far.

[Mandz12 in reply to Ruthie13]

That's wonderful

[MichaelS]

I was on it for about 30 years after being diagnosed with PV in 1983. The doses varied as the bloods changed and the spleen grew. The worst side effect for me was mouth ulcers; also skin rash on the face (Rosecea), anaemia makes the finger and thumb nails rippled and gastric acid, but that could have been due to the blood and dealt with by having omeprezole tablets. Btw I am now on Ruxolitinib for MF. Best wishes and make sure all your bloods are checked regularly : Hct, WBC, Plt and haemacrit.

[Mandz12 in reply to MichaelS]

I am suffering from acid and headaches.

[Phantasia]

Unfortunately for me I developed peripheral neuropathy which is uncommon with HU apparently. It also didn't bring my platelets down much. Haemo discontinued the meds and we will discuss other options next month. Hopefully PN symptoms will have settled by then. I wish you the best with your treatment.