Experiences with

Hydroxycarbamide

I was diagnosed with PV a year ago and was prescribed 1x500mg of Hydroxycarbamide daily. About 12 weeks ago, as my platelets were too high, I was told to take 2 at weekends. Today I was told my platelets were too low and to stop taking Hydroxycarbamide.

If Hydroxycarbamide reduced cells how would they know. This is really baffling me. Can anyone make sense of this for me.

I am wondering if anyone else who is taking Hydroxycarbamide has a high Bilirubin reading. I have , what I think is too high which fluctuates within the 30’s and sometimes into 40’s/umolL Serum Bilirubin.

are any of you aware that Hydroxycarbamide can cause peripheral vision problems?

I’m ET on Hydroxycarbamide. Have recently had Diflucan treatment for Thrush ( 150 strenght capsule day 1 and 150 strength capsule day 4) I am looking for recommendations for best probiotic .. Thank you

My understanding is that until the dose of hydroxycarbamide is titrated and stabilised, blood tests should be more often… but I may be mistaken. Could you kind people advise me, please.

I’ve been on Hydroxycarbamide for 10 years now for ET JAK2+. For a few years I’ve had tingling in my legs and feet. However , they don’t tingle anymore but feel numb now. Also had burning skin . I’ve literally just read that peripheral neuropathy is a side effect of HU.

Hi all, I've beed recently diagnosed with Essential Thromcythemia and have been presented with two treatment options, I guess it will all be around side effects and was looking for information on peoples experiences. I understand it will come down to my personal reaction, has any one been on both? I'm

I have ET and bren on hydroxycarbamide for 6 years and just been told my lgM level has increased to 2.2 any ideas about this. Info was in a letter so no explanation.

Has anyone here had problems arise with their vision after taking HU for a long time.?? I’ve got field vision loss …, been in HU over 10 years. My neuro ophthalmologist has said that Hu is known to cause problems with oeripha field vision. I now also have peripheral neuropathy - another known side

I’m wondering how many of you knew that neuropathy a listed side effect of Hydroxycarbamide . Also bilateral field vision is a listed side effect. If anyone here has experienced these side effects I’d be grateful for your replies

I was diagnosed with ET back in May and have been taking hydroxycarbamide 500g per day since then. One of the main side effects I suffer is fatigue. I take the medication in the morning along with a mini aspirin and a small dose of amlodipine for blood pressure control.

anyone else have problems with itchy rash on feet whilst taking hydroxycarbamide ?

Is anyone who is knowledgeable know if taking Hydroxycarbamide over 10 years is one of the medications that can cause lupus anticoagulant? I’ve read that certain medications can cause this but don’t know if HU is one of them.

I’ve suddenly come down with gout in my big toe, it’s come out of the blue for no apparent reason. Does anyone know if there’s a connection with hydroxy which I’ve now taken for numerous years? I’m puzzled, I thought I had a healthy diet with no sugar and little alcohol. I haven’t found the way to

And my only option is Angagrelide, have tried Hydroxycarbamide which didn’t agree with me. Has anyone else experienced this issue? Whats Anagrelide like? Any thoughts much appreciated

Are any of you also on hydroxycarbamide too?

Has anyone out there changed from hydroxycarbamide to Anagrelide with success.

Hello I’m taking Hydroxycarbamide 500mg daily for the last 3 years for ET jak2 positive. Yesterday 4 of my fingernails came away from the skin bed…… so sore and painful. I have asked Doc Google who says this can be caused by long term chemotherapy medication.

Today I saw my Nuero opthalmologist who has said Hydroxycarbamide could be the cause of this. He said 10% can get this and as I’d been on it 10 years it should be considered now. Also it could be what is causing me to have pigments at the back of the eye.