A day in Blackpool

Thank you so very much for the warm welcome to this site.  I had an appointment to see the specialist nurse yesterday at 10.15.  As I live a distance from the hospital, I go early on the same day as my appointment for my blood test.  I was at the hospital before 9am and went straight to the lab.  I then took my time over a coffee and went to the clinic. At 12.30 I was still waiting so checked with reception in case I had been overlooked.  The specialist nurse came to me and said I would have to see the dr as well which I eventually did.  A venesection was arranged for me for later in the afternoon and I have been prescribed hydroxycarbamide.  It all feels more real now especially when I read the instructions with the tablets which advised rubber gloves to handle.  I have been feeling okay and for now I am hoping that the side effects of the drug will not be too harsh.  Thank you again.  I am glad I found this site.

13 Replies

  • Hello Fionnuaghla, sounds like you had a very long day at the hospital. I know it is very scary when you are handed your Hydroxycarbamide, and when you read the leaflet your mind goes into overdrive.  I am hoping that you won't get any side effects, but if you do that they are as you say, not too harsh.  Remember to drink plenty of fluids and to stay well hydrated, if you would like me to send you one of our booklets on Hydroxycarbamide then let me know by email with your postal address, maz.cd@mpnvoice.org.uk.  Best wishes, Maz 

  • Hello Maz, thank you for your prompt reply.  I was given a short leaflet at the hospital about hydroxycarbamide.  I guess more knowledge could be useful so I would appreciate your kind offer of the booklet.  I have tried to email by postal address to you but am getting a prompt that the address is not recognized.  I copied it from your message into my contact list.

  • not sure why you can't email me, the address is correct maz.cd@mpnvoice.org.uk 

  • Hi Fionnuaghla,

    Please don't feel too disheartened.  Many many people take Hydroxcarbamide without any of the side effects.  I have only been taking it for 3 years but suffer no side effects from it.  The leaflet is scarey, I read it when I was first perscribed and have not read it since.  Personally I do not use rubber gloves when handling the tablets but that is my choice.  I feel they are coated and all the drug is inside, but I do wash them down with a glass of water.  Most people say taking the first one is hard, but now I take them without a thought just like aspirin.

    Good luck

    Judy x

  • Thank you, that is really encouraging to hear.

    Warm regards

  • The rubber gloves amused me. Not much point when you're eating the stuff! X 

  • Exactly what I thought, maybe I should consider lining my mouth with rubber as well.

  • Hi it's sounds like you have had a very long day. Hope you are now home resting with your feet up. I was very scared when first started taking hydroxy few years ago now. However I can hnestly say I have not really suffered any side effects. Except maybe fatigue but that could be the ET or the drug or just fact I am getting older!

    I try to keep my fluid levels up so I keep hydrated and avoid more dry skin too. I take my hydroxy in eve or night so if do get fatigue from it sleep through it. I mostly just followed the good advice of our friends on here and all is going fine and in fact at moment I only have to take it twice a week to keep my platelets at normal level. This is a far cry from when diagnosed as I was pretty poorly following a portal vein thrombosis! I work full time and lead a fairly normal life.

    So although it's not nice putting this stuff inside us, I must say it has had a positive effect on my health.

    Good luck with it all and let us all know how you get on best wishes Lizx

  • Good luck with it and I hope, like me, you get no side effects. Never used rubber gloves though! good luck, Fee

  • Hi Fionnuaghla,  sounds like a gruelling day but worth it to get sorted.  Try not to worry about Hydroxy, I have taken it for several years, certainly don't wear gloves to take it (but I wouldn't dream of advising you to ignore the leaflet you have). It all sounds scary at first, now I pop them last thing every night without a thought.  I don't really have any side effects, I do get tired later in the day but that might be the "condition" rather than the Hydroxy for all I know.  So take heart, lots of us take Hydroxy with no problems and manage to lead a fairly normal life.  Fingers crossed it will be like that for you too.  Best wishes, Frances

  • Hi, I have ET and have been on hydroxycarbamide for nearly 3 years. It is very daunting when you first go on it, especially after reading the leaflet!!  I did have a few side effects at first but they faded as my body got used to the drug. I don't use rubber gloves to handle them, although I handle them as little as possible. My dosage has just been increased to 17 per week from 16 as my platelets have been climbing again, hopefully that will get them down again.

    My arthritis gives me more trouble than the ET!

    Best wishes

    Lizzie X

  • Sending good wishes as you start on the drug.  I've been on it almost a year now, and although I don't like taking it, I do feel better than I did a year ago.  

  • Hiya, like everyone else, I never use gloves to handle hydroxy, not when I am swallowing them.  I won't let anybody else handle them though.  Tiredness is part and parcel of MPN and by 4.30 - 5.00 a wall comes down and the extreme tiredness comes in for me.  I, also take the hydroxy in the evening so I am not so tired during the day and it has worked out a lot better.  I feel very lucky that my 2 x 500 tablets have worked so well.

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