Worries about side effects of hydroxycarbamide - hair loss in particular

[gardner99]

I was diagnosed with ET last July aged 66. I also have type 1 diabetes though this is well controlled.

My consultant recommended I start taking hydroxycarbamide but I have resisted so far as I'm concerned about the side effects (particularly hair loss!), though I take daily aspirin as prescribed.

I wondered how many users of hydroycarbamide have experienced hair loss in particular, and also other side effects? My next appointment at haematology is at the end of February when I might consent to taking hydrxycarbamide, so I would appreciate the opinions of others on this medcation, and whether they feel any benefits from it.

Thank you for your help!

[lizzziep]

I lost a little bit of hair when I was on it, only my hairdresser noticed! I have thin hair anyway.

[gardner99 in reply to lizzziep]

Thanks lizzie. Just starting out and wanted to know how others got on. Best of luck on the journey

[Mishie14]

I was on hydroxyurea for 6 months as first drug response to ET JAK2+diagnosis. Do not have diabetes. HU brought down platelets but the side effects ruined my quality of life. Extreme fatigue, brain fog, hip bone and joint pain, headaches, loss of appetite and sense of smell, right from the start was hair loss. I had a lot of thick hair that made brushing and washing it scary. I was a mess. I told my doctor if this is life taking the treatment I’d rather take my chances with the high platelets. I am currently on peginterferon and am so happy to be able to get it. It’s a game changer for me. So we all react differently, your experience can go either way. there are a lot of positive experiences with HU along with the not so positive as I experienced. BTW, I have been getting first biweekly and then/now weekly blood tests not just to check platelets. There are other telling results associated with the disorder and it’s treatment drugs like high liver enzymes—calling out just one of many to look out for. Stay safe!

[Rebus12]

Hello, I was diagnosed 18 months ago ET JAK2 . Initially I was prescribed only aspirin. As platelets rose I was put on hydroxycarbamide, 1 tablet a day. I felt slightly nauseous an hour after taking it.

As my platelets dropped I was told to reduce hydroxycarbamide to a tablet every other day. The nausea stopped. Whether that was due to the reduction in the drug or my body getting used to it, I cant tell.

I detected a slight thinning of my hair when commencing hydroxycarbamide. Neither my hairdresser or my husband noticed. Now after being on the drug for 9 months or so, my hair has returned to normal.

Hope this helps,

Maureen.

[gardner99 in reply to Rebus12]

Thanks Maureen. Very helpful. It's interesting to know how hydroxicarbamide has affected others - we're all so different! I'll try it out and see what happens. Very best wishes

[jewelmaker]

Along with aspirin I take 1000mg to 1500mg of hydroxyurea daily for the past year. I have had no hair loss except I don't have to shave my legs or underarms anymore. I do have extreme fatigue which seems to be the only side effect. I am 75 years old and have ET.

[gardner99 in reply to jewelmaker]

Thanks jewel maker. All this info is really interesting and I feel a bit better about taking hydroxy now.Very best wishes

[Planting]

I take HU (12) tablets a week. I was diagnosed 7 years ago. I’ve had weight gain, hair loss, bone pain and tiredness. I blamed everything on HU. I’ve now gone on a diet which has no processed food in it. The tiredness is much better, the weight is coming off and I feel good. Hair loss manageable and aches and pains before HU and may be due to age. I’m 81 . The choice is up to you but we are all different. I’m not thinking of changing at the moment.

You’ll be well informed anyway if you stay on here

Planting

[gardner99 in reply to Planting]

Very true! I'm surprised and very grateful for all the advice. I'll give it a try anyway as everyone has such different experiences with HU. Thanks for sharing, and best of luck.

[dabs121]

HI, I'm a 69 yr old man and my hair was thinning anyway, but one tip I was given was to take the HU with a meal to reduce any stomach upsets. I have been taking 500mg daily for a year now with my evening meal and it's been fine.

Like many I was worried about taking it because of what it is, a chemotherapy drug, but this is a low maintenance dose and if by chance do get any se effects, discuss them with your Dr's. Good luck.

[gardner99 in reply to dabs121]

Thanks Dabs121. I'll give it a try

[Rebus12]

Hello again, forgot to say that my fatigue affects everything I do. I have now learned to cope with it and plan my activities accordingly.

I knew that there was something going on in my body because I was getting extremely tired having done only normal activities. This made me visit the GP. Only after several conversations with the surgery, I was referred to the haematology department and then on to a specialist in MPN's.

In my opinion it is essential to get a specialist, even if that means travelling.

Hope this helps.

[gardner99 in reply to Rebus12]

Many thanks. It's all useful to a novice like me.Take care.

[ALlady]

I have had ET aspirin only for many years. Last year at age 76, my diagnosis was changed to PV and after several phlebotomies I was placed on HU. From reading all the many bad side effects I was very worried, but after several months of 1000 a day my counts are in normal range and remarkably I have really suffered no side effects other than dry skin and less body hair. I have a very thick head of quite fine hair and might have seen minimal thinning.

I feel very fortunate to have tolerated this drug so well.

[gardner99 in reply to ALlady]

Thank you ALlady for your helpful observations. I will be starting HU next month so fingers crossed. Everyone's input has been helpful

[Scottishterrier]

When my consultant put me onto Hu or offered me alternative medication due to having a hepatic infarction the first thing I said about Hu would I lose my hair and he say no but it did mean I couldn't have childrenI have a good thick head of hair

Stay safe

Scottish terrier

[gardner99 in reply to Scottishterrier]

Thanks for taking the time to comment. I've just started Hu today, so I'll see how it affects me. Very best of luck.