HU and funny taste in mouth

I just notice today I have a weird taste in my mouth, just recently started the meds, been on them over a week now. Take at night with plenty of water. Its like a metallic taste has anyone had that problem?.

Also group can you tell me when you first were diag and were put on meds, how often you had your blood checked and how often you saw the Hemo Dr. I was a little taken back today when I had to reschedule my first apt on the meds and was told he was busy and nothing open until Dec 2. What???? seriously I asked she said yes he has taken on many new patients, ok that's another seriously???. so I agreed to see the nurse practitioner instead of him and she will relay questions to him if necessary should I be concerned over this???.

Thanks appreciate any and all replys.

7 Replies

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  • Hi Mickey

    Yes I have that taste every single day. It improves as the day goes on. I was diagnosed in 2011 and have my blood checked every three months, six monthly at the hospital and in between at the GP surgery. I only see my consultant now about once a year, with other competent doctors seeing me in between. I take it as a sign that my condition is well controlled and it seems to be. It does make you wonder if our conditions are as rare as at first thought though doesn't it? X

  • My husband was diagnosed in December 2013 he had weekly venesection until the February then monthly venesections he went from April to September without a venesection we were so pleased. Then by December last year he had to have monthly venesections.

    He started hydroxy 2weeks gone Friday he seen his consultant who checked his bloods he was happy with his results. His next app is 20th November which is next week.

    She he's had two check ups in the month!

    That doesn't seem right leaving you that long, but every consultant is different.

    I'm going through a medical stress my self had a massive blood clot in August and I'm still waiting to see the consultant I've only been missed off the data Base!!! I asked my warfrin nurse to chase my appointment up!!! So I trust no one at the minute.

    Must say my husband consultant is fantastic his previous one was terrible!

    My husband said his mouth is dry. Keep drinking plenty

    Take care

  • As long as your bloods are getting checked and your doseage is right that's the main thing.

    The chemotherapy staff are great they check my husbands bloods.

    My husband sees his consultant every 3 mths

  • Hi Micky 64

    Been on Hydroxy since beginning of the year saw Consultant every week to monitor bloods. This gradually went to fortnight monthly and now every 2 months. Was told last time I saw him if everything was fine would go to 3 months. Have to say had no problems with drug apart from a bit of nausea at start. Hope this helps your case . M

  • Hello Mickey 64, I am taking Hydroxycarbamide and I have noticed a metallic taste in my mouth too....don't know what 'meds' you're on but I take mine morning and evening and have been noticing it for some months now. I was diagnosed in 2013. I have my blood checked every three months and a nurse practitioner calls me with the results and 'tweeks' my dosage if necessary. I see the Consultant once a year now. I am not concerned that I don't see the consultant as I think their systems are quite robust and if there is a problem they quickly get back to me.

  • Hello, the metallic taste is something I have almost daily, even some years before I was dxed with ET in 2008. I am on HU 1000mg daily and the taste is still there and tends to get worse if I eat sugary things and foods containing glutamate. Most of the time I am feeling fine, see my heam once a year and have blood checked every second month. This is my first post here thanks for the add. Looking forward to getting to know you.

  • metallic? maybe copper? Your body chemistry usually adjusts; but

    Funny - two cannibals were eating a clown....

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