Worried

[Ruthbragg]

Hello , I was diagnosed with et a month ago been taking hydroxycabamide for just over two weeks starting to feel tired and aching , I am so nervous for the future , I am 72

[Mazcd Partner MPNVoice]

Hi Ruth, welcome to our forum, we can all understand how you are feeling, so you are in the right place for some help and support from the lovely people here. If you like I can send you some of our information booklets, if you email me with your postal address. Best wishes, Maz

[Helpatlast]

Hello Ruth welcome to this lovely site and you are in the right place for some care and support. Don't worry we all have our varying forms of MPN and cope with it - I have been diagnosed with ET for ten years now and been on HU for that time too - and although there are challenges to deal with, life is fine and can be enjoyed. So take things one step at a time, it will take a while for your body to adjust to the treatment and will then even out so don't worry that how you feel at the moment will be permanent. And anything you get concerns about pop on here, there is always someone to help. All the best.

[Superwoman]

Hello Ruth welcome to the forum, I have ET JAK 2 pos, diagnosed four years ago now, so far so good, as before I was told that I had ET I was getting so many things wrong with me that no one could put a finger on it, that was until I had the JAK 2 mutant test done and bingo there it was, which in a way it was a relief although frightening at the same time, but I was getting really fed up with it all, and beging to think that I was becoming a bit of a hypochondriac !!! so now I take Hydroxycarbamide, Asprin, and some other tablets, and quite pleased that I can tolerate them well, I make sure that I drink at least 2lts of water ( which is very important ) some times more in a twentyfour hour period, eat plenty of fruit and veg, plus I keep very active, this helps with the fatigue I don't go mad, and if it really gets bad then I rest, just listen to your body.

So welcome, you will find that we are all here for one another, and if you are worried just talk to us, we are all here for each other no matter what kind of MPN we have, all be it that we are a very rare bunch.

Jean

[Mwalimu]

I am older than you, 75 and was diagnosed with ET 6 years ago. I take HU and asprin each day, and try to eat healthily. I have been fortunate because I tolerate this medication well although at first I found it a little difficult. What I want to say is that, I have found, if I am doing something which really interests me and have a deadline, I feel very well! I hope this does not sound too self-congratulatory - it's been a great surprise to me. I have written this because I thought you might feel better about the future if you could find something to do which really absorbs you. My experience has been that I feel less tired and am able to keep going for a long time.

I hope you find something which does for you what writing a small history of my local church using primary sources at my local history centre and oral interviewing has done for me. Good Luck.

[linds]

Dear Ruth,

You are going to be fine, perhaps not as you were ten years ago but fine nonetheless. I am slowly creeping towards 70 having had MF for three years and PV before that and absolutely understand your tiredness. It's a nuisance but do listen to your body and when you need to rest, do so. I take so many pills but when I take them I think thank you because they give me the life I have. Don't be worried about the future if you can possibly help it because there really is no point in that - today you are here with all of us and we understand everything you feel. We are with you in spirit and computer! Best wishes Ruth, thinking of you.

Linda x

[Pennypen]

Hi Ruth I wouldn't worry too much as I have been on the medication for eighteen years now and it will settle. You will get bouts of being tired and achy but it will pass. I have done really well as I was taking one a day now I have to take another three a week and have a blood test in two weeks to see if it has made any difference. There are allot on this forum that are taking allot more than me.