Newbie here

[Jacki_Clayton]

I was diagnosed with PV 2 weeks ago. I started HU and so far the only side effects have been tired, and for the first hour or so after taking the 500mg capsule I have a tinny taste in my mouth. I have tons of questions. Who wouldn't?

[piggie50]

Hi Jacki, welcome to the forum, we're a friendly bunch so ask away there will always be someone to help you. I was diagnosed with PV 12 years ago and have been on Hydroxy for the last 4 years. I'm very lucky that I get no side effects at all. I take 500 mg daily and 1000 on Sundays. I take mine just before bed with my other meds. I don't get the tinny taste in my mouth now, but I used to before I started Hydroxy. Nothing to do with the PV or Hydroxy. I was diagnosed with hiatus hernia so also take Lansoprazole daily.

You will get lots of information here and on mpnvoice.org.uk

Best wishes

Judy x

[Jacki_Clayton in reply to piggie50]

Thank you Judy. It's a new journey and in the good moments I'm confident that this won't be too much of a problem. I had my first Phlebotomy (Venesection) treatment and I didn't do too well. I got dizzy and I'm so pale anyway they plugged me in for a quart of fluid. So, they didn't get the full pint this time, next time they said the doctor would probably order that I get the fluids concurrently with the phlebotomy. That makes it more time consuming, but I'm hopeful that the symptoms of the PV will lessen. I have just about all of them. Thank goodness that my yearly blood work was the key, I would never complain that my toes hurt.

[lizk1993]

Hi Jacki, you've come to the right place There are lots of folk on here who've been living with PV for a long time. I'm a relative newbie too, having only been diagnosed in June. Takes a little bit of coming to terms with, doesn't it? You'll find a lot of answers to any questions you have on the MPN voice website. Lots of really good info there. If you can't find what you're looking for, ask anything here. I've found the people here really supportive. Can't tell you anything about hydroxy as I've not been given it - yet.

Take care

Liz x

[Inca]

Hi Jackie ,Welcome to our very special club!! I am P V nearly 8yrs now.Had venesections for a while until blood was at an acceptable level,then straight on to Hydrea,I was diagnosed and treated in Fr. tho in U K for a few weeks just now,will go to London forum.,all being well. Tiredness goes with the disease and the medications...you do learn to manage it ,drink lots of water and rest when you must,exercise is a must,but only sensibly,walking for me is best with my two dogs....they insist so there is no putting off!!l work too,sculpture ,not as much as I did before but it keeps me well occupied,stops me worrying.....as we all find stress is not good for us ,just done a show here ,need to rest for a few days tho now. You will find great help on this site,been a life saver for me,as it is a 'lonely' maladie,no -one knows about it !!!Very Best to you .Sally

[Jacki_Clayton in reply to Inca]

I start the Hydrea right away and the first treatment was about a week later. Now I'm just two weeks on the drug and my face is breaking out (not pimples, just red bumps). I have a really bad knee and go to PT twice a week and they work me out for at least an hour. I was just going to take a walk but it's looking like rain (again). I'm just north of Boston, MA in the USA. Tough time of year to try to get outside for walking. I am a graphic designer full time and I crochet. A LOT! That's my stress therapy. Thanks for your lovely words. It's so nice to have found this site and all you lovely people! <3

[Mazcd Partner MPNVoice]

Hi Jacki, welcome to our forum, we can all understand that you have lots of questions, we have all been there, so ask away, we will do our best to answer them for you. Have a look at our website mpnvoice.org.uk there is lots of information on there which I am sure will help you. If you would like any of our booklets please email me at [e-mail]

best wishes, Maz