my life

[dgk70]

Hi everybody, I'm Darren and I'm 47 years old. I was diagnosed with ET about six months ago. I am currently on 2 x 500mg hydroxycarbamide and 75mg of aspirin a day, I generally feel ok but just get tired, I also have crohns disease, asthma and menieres disease. The medication i take for crohns is 75mg of azathioprine and 500mg twice a day of pentasa .I find menieres disease my worst ailment ,i have constant ringing ( tinnitus ) in my right ear and get bouts of vertigo which are horrendous .I am on no medication for this condition is there is no cure , i have been on several different medication over the past twelve year but nothing seemed to help .

[Aime]

Hi Darren, welcome to this forum and sorry to hear of your ailments, you're certainly not having an easy time!

I have Polycythaemia, one of the other mpns but a lot of the symptoms are similar. Drinking plenty of fluids, eating a healthy diet, exercise when you can seem to be some of things which help our conditions. Knowledge is a powerful thing too. If you look at the MPN Voice website you can trust the information on there because the net is sometimes not the best place to search for medical knowledge. This forum is monitored by Maz our editor who keeps a tight rein on any improper posts, etc so again this forum is an excellent place to join.

Joining this forum was the best thing I ever did, making a lot of friends, some of whom I have never met but they are willing to give me their time when I'm having a bad day. Maz and her team also organise forums up and down the UK which are really great opportunities to learn more and meet others with your MPN.

I'm sorry I can't help with your other ailments but I hope you will find support, friendship and empathy on this forum like I have done. Once you get more knowledge, you feel that you have some control over your ET instead of vice versa. Kindest regards Aime xx😺

[dgk70 in reply to Aime]

Hi aime , Thanks for your kind response ,I do try to work out in the gym when i can . I also drink plenty of water , about three litres a day but i find i am up a lot in the night going for a pee , which doesn't help with the daily tiredness . x

[Aime in reply to dgk70]

Hi Darren, good for you going to the gym, I go for a walk or swim! I try and drink more water in the morning and afternoon and starting cutting back for the evening because you need your sleep too.

You are still in the early stages of your diagnosis. For me, it was a very anxious and bewildering time. I was diagnosed in 2012 and have gradually learned to live with my MPN but it no longer has total control over my life. I do still have bad days when it wins but on the whole I think very little about it during my daily life. I have learned (probably obvious to most) that my thoughts are responsible for how I feel and if I feel awful, I think about my favourite time with my kids or grandchildren and that makes me smile and I feel better.

Do keep in touch with this forum because there are a lot of lovely people who will support and help you. Maz can also organise a buddy for you if you need somebody to talk to one to one.

Kindest regards Aime x😺

[2hankers2 in reply to Aime]

Hi Darren, I wasn't on hydroxy but my husband Kevin was. At first this drug seemed to bring his WBC down and he tolerated it pretty well. He did get strange skin problems but not sure from disease or drug. Kevin was taken off this drug and put on Jakafi when his WBC was 480,000. His HGB stayed around 6 to 7 and he became transfusion dependent. Kevin had MPN, U . The U for unclassified and there really wasn't a protocol to treat him . After battling for 11 months he made the decision that he couldn't continue the transfusions weekly and came home from hospital on hospice. You can't live without RBC and only lived for 6 days. He passed in July.

If Kevin hadn't had MPN, U he probably would have done well on the hydroxy.

Good luck on your journey and God bless you.

Libby

[mjfin72]

Hi Darren and welcome. Sorry to hear you have ET on top off everything else you are dealing with. I have ET also diagnosed last Sept and currently on aspirin, possibly starting Hdroxy in couple of months.

This is a fantastic forum for help and advice. There is always someone on hand when you need some support. I don't often post as this is all reasonably new to me too and took a while to get my head round so don't have much advise to offer compared to some here who have been living with mpns for years. I do find it reassuring tho when I'm unsure about symptons or the condition that someone is or has experienced something similar.

Take care

Mandy

[Mazcd Partner MPNVoice]

Hi Darren, welcome to our forum, which as you can see is a very caring place to be. I can't help with the symptoms you are experiencing with the tinnitus I am afraid, but for anything to do with your MPN, just ask any questions you have and we will do our best to answer them, and please do have a look at our website mpnvoice.org.uk, and let me know if you would like to have a buddy. Best wishes, Maz