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Sickle Cell Society
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Hydroxycarbamide Side Effects - What are your experiences?

Hi All,

I recently started taking Hydroxycarbamide on suggestion of my consultant, I'm 35 and have SS. Its been a couple of weeks and so far i've been noticeably more tired and about 2 days ago i developed a rash across one side of my face - i believe this is a direct side effect of the medication.

I'd like to know what else I can expect, what have other people's experiences and reactions to this medication been like? Do things like the tiredness and the rash go away?

I'm hoping that the long term positive effects will outweigh the negative.

Thanks

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Hi lumo, I'm a black male, 36yrs old, live here in London. I wish I could tell you something good about the Medicine but unfortunately I can't. I was also given the Medicine at my Sickle cell clinic at Lewisham hospital, London but after being told of some of the side effects and having to save some of my sperm in a sperm bank as I was told it could affect my sperm count if I try to have a child with someone in the near future, i started to get really scared that the drug might do more damage than help, i was also told i might lose my hair plus other things and i always have to come to the clinic to have my blood checked, it started to sound like a cancer drug to me so I just chucked it in my medicine cupboard and I haven't touched it till today. I currently work fulltime and I cannot afford to take a medicine that might make me so tired or do something to me that I wouldn't be able to work or fend for myself. I'm a Nigerian living in London and i'm not entitled to any benefit whatsoever, so i have to work for every penny to pay my bills and my rent and also take care of my 3yrs old daughter and i don't want any medicine to get in the way of that. I know how to manage my crisis and pain, i know when to stop and rest, the only persistent problem i have these days are ulcers, terrible leg ulcers. Sorry I'm unable to help and good luck

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Hi Rotimi2 although Hydroxyurea has various side effects on the label many patients take it without any problems at all. your doctor will monitor your blood count carefully to optimise the dosing. In my experience many patients have a really good response to Hydroxyurea i haven't had anyone lose their hair apart from 1 girl who had extremely mild thinning which I couldn't actually see. I'm not telling you to take the drug but maybe have another talk with your doctor.

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Well done dear friends. I loved all sincere responses of all those who contributed. Hydroxyurea can be used in combination with other medicines for cancer treatment but it does not rule out that it's a miracle medicine for sickle cell. Like all respondents have said , use it for a long while and closely with your hematologist and you ll get benefits. Some benefit more than others but all will get some benefit. Better quality of life, reduced crisses particularly the chest syndrome. Bless you all.

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Hi Lumo.

I have been taking hydroxycarbamide for 13 years now and I am 53. The drug does not really start working until after your first year. It needs to build up to useful levels. In the first month I took hydroxycarbamide I vomited, but persisted. My dosage was changed and I began to feel better.

After my first year, I was going to the gym 3 times a week, with light jogging at weekends. Something I have never been able to do.

I would advice that you talk to your hematologist and you do the regular checkups. I am extremely grateful I was put on hydroxycarbamide when they did, it has literally changed my life. I have so much more energy.

I wish you all the best.

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Hi lumo,

I'm male, in my fifties, and can only speak for myself, I have genotype-ss, I live in the UK and had been on hydroxycarmide for more than ten years, this drug changed my life for the better. You need with your doctor find a dozage that work for you, and don't let anybody discourage you from having this medication which had given hope to a lot of people with sickle-cell . As you fight on, you need to have the courage to make the right decisions for yourself .

Kind Regards

Coldashe.

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Hi,

Thanks for the feedback so far, its good to hear of the positive effects it has had on some peoples lives, I'm hoping the same for myself. It has only been a few weeks so i'll persevere for a while longer. i;m taking 1000mg per day at the mo.

Its just a bit disheartening when it has such strong side effects that negatively impact your life. Like Rotimi, i work full time and have responsibilities so when you take a medicine that drags you down but is supposed to help it can be a bit discouraging.

Anyway, I will continue taking for now and talk to my consultant haematologist when i next see him in a few weeks, I'd be grateful to hear any other experiences of the drug.

--Lumo

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Hi Lumo, I also have Sickle Cell Anaemia rhesus SS. About a year and half ago my haematologist consultant prescribed me Hydroxy carbamide two tabs a day from Monday to Friday. I was warned that due to my leg ulcers if it flares up I will have to come off it. Indeed my my ulcer flared up l was taken off the drug until it healed up and started the medication again and I’ve never been better. My crisis levels have dropped drastically and i feel good within myself. So persist a little while and maybe you and your Constant can find a dosage that suits you. Good luck.

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Hi Lumo,

My daughter who's now 16 started on 500mg last April because she was sickling anytime she had her period. The medicine made her phlegmy and lethargic at first. And it didn't appear to alleviate her symptoms. She was also concerned about hair loss and infertility. After 4mths they increased the dosage to 1000mg, which she took at night to alleviate the phlegmy feeling. By 6mths her health seemed to improve. She wasn't sickling every month. Instead of taking 2/3 days off school before the Hydroxycarbamide she can now cope and doesn't have to take any days off, but manages with paracetamol or co-codamol during the 1st day if she needs it. See how it goes for about a year before you decide to give up. Take care.

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Hi JMK42,

Thanks for your reply, yes the dosage is so important I now realise. I saw my consultant last week and he dropped my dosage down to 500mg because of the side effects. I'll do that for a while before slowly being increased again.

Good to hear stories about how the drug is improving people's lives, i'm definitely going to try sticking with it.

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