Hydroxycarbomide

[Ginny70]

I have just started on hydroxycarbomide. I wondered how many people have experienced sickness and hair loss on a low dose of this drug. I have ET and PV and I'm jak2positive. Thanks

[WileyFrench]

Hi Ginny

Welcome to this forum - it is THE most helpful place to be for people like us. Great people with sane, practical, real work experience. It’s been a godsend for me since being diagnosed and starting hydroxy. I have ET and take one hydroxy per day - since end of June. No hair loss (and believe me I check!) and no fatigue etc. I bet you’ll be the same.

[Ginny70 in reply to WileyFrench]

Thanks for reply what daily dosage are you taking. They have started me on daily 500mg

[WileyFrench in reply to Ginny70]

Yup me too. 500 mg daily, same as you.

[Ebot]

Hi. Like you I have a PV diagnosis with high platelets (original diagnosis was unclassified ET). I’ve had absolutely no side effects from Hydroxy except my counts have all tumbled and I’m just about ‘normal’ in all respects (HA! HA!). I’m on 500mg a day with an extra capsule once a week.

I do wish they would rewrite all those drug information leaflets to reflect the fact that the overwhelming majority of people experience no side effects whatsoever (and if they do it’s usually fleeting), least of the really scary ones. Just make sure you keep to a regular sunscreen routine. I just feel a whole lot better. Wishing you well.

[MarkD6701]

I'm lucky with Hydroxy in that I only need to take it four days a week with no side effects at all.

[conno61 in reply to MarkD6701]

Good to know mark as I'll be on it soon and don't want to end up bald 😨

[lizzziep]

Hi Ginny, I did lose a little bit of hair from the top front of my head when I first started on hydroxy, not really noticeable, except to me and my hairdresser, I was on a high dose - 4 x 500mg per day plus extra at weekends, however after 3 years I was changed to Anagrelide, and after 2 years on this it has mostly grown back, I never had really thick hair anyway.

Best wishes

Lizzie

[Peterwi]

Hi

I’m on 500 mg daily. I have already thin hair, but when starting HU it got even thinner. At the same time I had muscle pain and I felt sick and tired. Today after few years on the same dose I suppose my body has adjusted to HU. Hopefully it will be the same for you.

Regards

Winni

[rjw1]

Hi.. I'm on 17 X 500 mg hydroxy per week and have been for 2 years...I'm PV.....in the last 2 months I have started to lose my hair and also getting sore tummy... I'll be bringing this up at my next clinic in December...oh and fatigue as well

[Fionnuaghla]

Hi there Ginny

As you can see from the responses, we are all unique individuals reacting differently to hydroxy. It is almost 3 years since I was diagnosed with PV. I had weekly venesections, then fortnightly and eventually less frequent. I started on hydroxy about four months after my diagnosis. My dosage has increased from 1x500mg on 4 days, to 1 every day, to 1 Mon to Fri and 2 Sat and Sun, to 2 every day and now I take 3 one day 2 the next which is probably similar to rjw1. At the moment I feel well and at my hospital visit last week my blood has finally stabilized (below the magic 45 for the first time). Shortly after my diagnosis, I seemed to be permanently tired which could also have been the shock. For the past few months, I have felt good. I have not suffered any hair loss and generally live life as usual. Sometimes I feel it is difficult to determine if side effects are from the condition, the drug or my age. I hope you do not have any side effects and wish you well.

[Sallush]

I’m on 2 x 500mg Mon - Fri, and 1 x 500mg Sat and Sunday. Slight increase in hair loss, nausea at the beginning but not for long. My fingernails are weak though - compared to before. But nothing drastic. You’ll be fine.

[Reggieroo]

Hi GinnyI’ve also been on Hydroxy for six years now and lose hair all the time. I shed fistfuls after washing my hair and also when routinely brushing it. Luckily I have thick hair naturally but it’s bound to thin it somewhat.

Reggieroo