Worried about Hydroxyurea side effects.

[Ridenez]

Hello. I am in USA and diagnosed with PV in July 2020.Currently on baby aspirin and Phlebotomy as needed. I meet with my Haemo in two days and thinking he will put me on HU. I am worried about side affects and any replies appreciated.Thank you.

[paradiastole]

The only side effect I have experienced was a lot of farting during the first few weeks. Is there a reason why you think you might be prescribed hydroxycarbamide?

[Ridenez in reply to paradiastole]

Thanks fof the reply.If that is the only side effect I would be grateful.Was worried about vomiting and such.My reasoning or thinking he will recommend HU is WBC remains high with platelets around 600.

[paradiastole in reply to Ridenez]

It has been very effective in bringing my platelets down from above 700 in May to around 400 now, and my RBC level has remained steady without venesections. It’s easy to scare yourself reading drug information leaflets (I’ve done it myself) but in most cases people will take the drug, not have any side-effects, and will benefit.

[Ridenez in reply to paradiastole]

Thank you.Glad it is working for you.Best wishes in 2021!

[Ridenez in reply to Ridenez]

That is platelets around 600 and high WBC

[Hemaeohisto13 in reply to paradiastole]

I’ve been having diarrhea quite frequently since I’ve started it. I couldn’t go to the bathroom for days then suddenly it wouldn’t stop. It’s been going like this on and off since I started the medication a couple weeks ago.

[Lifam]

Hi, HU is like any other drugs, all have side effects. HU (chemo drug)also has lots of side effects, but everyone response to it differently, also it doesn't mean one will have all the side effects, most of us here tolerate HU quite well. I personal DONOT have much side effects at all, but I'm only on the lowest dose.Still, it pays to study about HU for do and don't, will get benefits from it, because a few side effects can be avoided, all explain when you look it up.

[Ridenez in reply to Lifam]

Thank you.Very good information.I will do my homework on the HU.

[BloodZero]

Been on Hydroxy 2 years with no serious side effects. If he does recommend them why not give them a go. If they dont suit you just stop them.

[Ridenez in reply to BloodZero]

Thank you. I think that is good advice.

[BloodZero in reply to Ridenez]

One suggestion i could make is to never take it Hydroxy on an empty stomach. Have it mid meal. Ive done this from the start and never any pains or stomach issues.

[Ridenez in reply to BloodZero]

Makes sense and again thanks for good advice.

[KentBee]

Hi, I have been on Hydroxycarbamide for over 3 years. Initially, I had stomach pains and slight nausea for first month and then settled down. Recently had more issues but don’t think it is the Hydroxycarbamide.

[Ridenez in reply to KentBee]

Thank for the reply.Hope you new issues aren’t serious

[Wyebird]

Hi, I have ET and Not PV. For me hu has had a negative affect on my heamoglobin something I’ve always struggled with however, I can assure you in my case Hydroxicarbomide way way outstrips the negatives. Give it a go. They will start you on a low dose.

[Ridenez in reply to Wyebird]

Thank you and best wishes in 2021.your reply sounds encouraging

[Maisie10]

Hello. I have PV diagnosed 5 years ago. I have been on HU since then. No side effects I was given an anti sickness drug when I first started HU. It certainly has helped bring my blood counts down. Take care

[Ridenez in reply to Maisie10]

Thank you Maisie10. If I decide on HU will ask for anti sickness drug

[Bluetop]

I have been on hydroxy for 5 years with very few side effects, My nails have been damaged, though these do revive from time to time and I have been very careful with sun protection. I have followed advice to drink plenty of water. Good luck with this.

[Ridenez in reply to Bluetop]

Blue top thank you.All information is appreciated!

[Hidden]

I have been on it a few weeks and can honestly say I feel no different. I have no get up and go but had that before I went on it

[Ridenez in reply to Hidden]

Thank you. One of my exact concerns as I have lack of energy.Will the HU make it worse/

[hunter5582]

You will hear a mix of responses to your concerns about HU. Some tolerate it with few side effects, others do not. I am one of those who did not. I experienced toxicity even at very mow doses. If you are under age 60, then HU would not be a first line choice for many hematologists. Ruxolitinib is FDA approved for PV in the USA, but is much more expensive. PEGylated interferon is also much more expensive.

Bear in mind that ALL of the meds have a risk/benefit profile. So does not using cytoreduction. The combination of leukocytosis and thrombocytosis does put you at increased risk of thrombosis. More so if you are also experiencing erythrocytosis.

You have multiple treatment options. Educated and assertive patients receive higher quality care. Passive patients do not. You preferences regarding your treatment options are the driving force behind all of your treatment decisions. Your doctor cannot put you on HU or any other medication. Doctors make recommendations. Patients make decisions. Doctors write orders, but do not give them. You are in charge of your own treatment. It is very important to have a positive collaboration with your hematology team, but remember you are in charge of the team.

[Ridenez in reply to hunter5582]

Thank you for your very informative reply.It really helped a lot.

[Andyls]

I have ET and have been taking HU for a couple of years. I experienced very slight nausea at first and that may just have been anxiety about the drug. Anyway, I managed that by eating a graham cracker (digestive biscuit) when taking the capsule. I did not need any other anti-nausea medication. After a few weeks, I no longer needed even that. It took several months to calibrate the correct dose for me - enough to bring down the platelets but not lower any of the other counts too much. Now, I take 4 per week (Monday, Wednesday, Friday, and Saturday) and my bloodwork remains "perfect". As far other side effects, I haven't noticed any, but I am careful to use sunscreen and to stay well hydrated.

[Ridenez in reply to Andyls]

Andyls thank you for that information.I will keep that in mind if and when I start HU.Best wishes to you.

[mhos61]

I have been on hydrea for over four years and have had no problems with it. That doesn’t mean to say you won’t, but most people do tolerate it well. I did have the odd mouth ulcer in the first month, but that soon abated, and all is well now. I take mine after my evening meal with a large glass of water.

[Ridenez in reply to mhos61]

Thank you for the reply.Yes all of us have a little different makeup.Most of the reply’s I have received have been positive so I am encouraged.

[donkey66]

i have been on hydroxy now for about 15 years and other than a little hair loss have had no side effects .My daughter has also been on hydroxy for sickle cell and has no side effects at all.

hope this makes you feel better

[Ridenez in reply to donkey66]

Thank you for the reply.Is the hair loss noticeable?

[Lasbrisas1]

Hi Ridenez.I found that Hydroxyurea makes hair fall, plus affect eyes, we are all different, you could discuss with your Hematology Dr.

Good Luck,

Cherilyn.