Thank you so much for the information and I'm glade you are doing well. 

Kind regards 

HMD

Hello,
I am a 67 year old female and was diagnosed with ET 3 weeks ago and have been prescribed hydrea and asprin. Like previous posts I have suffered "send one insane" itching for years, and have been attending a dermatology clinic for 2 years where eventually blood tests revealed ET. However, just as I was diagnosed I started a light therapy course to alleviate the itching. My haematologist told me this is OK but I am worried about it. I also didn't realise that I shouldn't drink alcohol and have continued to do so, so am worried about that. In fact I have been trying to carry on my normal life which includes running 3 times a week, but is becoming more and more difficult. Also I am having trouble sleeping and so am frequently tired. I have now caught a cold and wondering whether I should contact the 24 hour advice line. Am finding it all a little bit overwhelming and scary.

Hey Jrunner

Hydrea medication has side effects of extreme tiredness so in either case the condition or medication will affect day to day. I suffer itching and scarring all over and find continually covering with creams does help reduce but not get rid of symptoms. If you get open skin wounds see your gp for hydrocortisone steroid cream to help. You will be succeptable to colds and flu symptoms as normal but contact gp if you have fever and vomiting symptoms. 

I have had this condition over a decade while working and being a mum to 4 kids so while living with daily symptoms you can get through the day with small goals. Fresh air small walks even just brings a relief and will help sleeping.

If you can't manage Hydrea ask your haemo consultant to try anagralide I swapped to this for last 3 years. They monitor you though for heart palpitations. 

Good luck and all the best over festivities 

Hi NM9309

I am so glad the anagrelide suits you.  As you may have seen in a previous post, I took that for 2 years on a trial, 18 years ago and developed heart problems, so they must have taken notice of the effect it had on me and the heart is now monitored.  As a consequence I have since taken hydroxycarbamide, but I do not have any of the effects you mention - tiredness or itching or problems with healing.  I do however, have to take heart mmedication to help my heart to function properly.  Ultimately, any medication that we take has to have some effect on us and sometimes not the effect we would wish, but we are both still here to talk about it - so that is the winning result.  Happy Christmas MaureenV

Hi Jrunner, 

Hope you are doing better day by day. 

My mum is feeling very well thanks god! She doesn't suffer any other symptoms except very mild headache. Her platelets number does vary every months we take a blood test otherwise she is fine. 

The only thing I can suggest is to see your GP regarding any side effect. 

Hope you get better soon. 

Hi everyone I was diagnosed wit ET end of October 

high platelet count 

still trying to get my had around it and thinking every pain and ache is life threatening 

on aspirin only at the moment and got appointment with consultant 16 January to check blood and see if I need chemotherapy tablets 

These posts more than helpful 

Thanks everyone 

Michael

Hello Michael

As you will have seen from previous posts, ET is controllable and therefore, I have been told, is not life threatening.  If you have a high platelet count, your blood clots more quickly, which can therefore worsen any possibility of your body having a stroke or heart attack.  So reducing the platelets to what is deemed to be a normal count, is the target.  I have had ET for over 20 years and am now 82 and I fully intend to try to live as long, or even longer, than my Mum did, which was 90, or my maternal grandmother, who lived to be 98 I believe.  As for the aches and pains, these are a natural reminder that we do not get younger as the years pass, but just have to remember to smile more!  Happy New Year.

Hi 
Thanks Maureen and Vanessa 
Thanks for your encouraging posts its good to know not as bad as I first thought will take time but sure makes one appreciate what they have in life
Thanks again 

Michael

Hi Vanessa, Maureen, Michael and everyone else. 

I’ve just arrived back at home after a doctors visit. Apparently I have ET. Platelet count is 962 (not as high as some of you report). I still need to have a bone marrow sample taken to confirm but it looks more than likely.

I’ve been given Hydroxyurea 500mg. I haven’t taken any yet but I’m looking at the box now and getting a feeling like I’m about to walk down a road I’ve never travelled before and am unlikely to return from. I’ve been reading up on alternate ways of getting the platelet count down; exercise and eating the right foods. I’m still looking at the box. I guess the best way forward is exercise, eat the right foods and take the Hydroxy as well. I’m not feeling good about it though..

Anyway joining this forum and reading everything you have all contributed has helped put everything into perspective and it’s also comforting to find out that I’m not alone here.

Thanks everyone,

JockL