How will et effect me with age

[Jbone636]

I was diagnosed with et at 28. My platelets are averaging 800k. I am currently just taking asprin. I just turned 30 and it has me wondering what to expect as I get older. I work full time now and I get along pretty good for the most part. I have weeks that fatigue will kick in and it feels like it's just a struggle to get through the week. Then I'll have weeks that I feel fine. I was just curious of what I can expect from aging with this condition

[Paul123456]

Research into MPNs has really taken off and great strides are being made. There are new drugs on the way....

So short answer is it won’t! Hopefully just got to get through the next c. 5 years

Best Paul

[Tico]

Unfortunately,nobody can answer that question as we are all different and some people lead a normal life,some sufferers can be beset with problems, i.e blood clots & strokes but with new drugs coming through all the time,hopefully one day we might find a complete cure.best wishes tina.🤗

[SuekJ]

There is no definitive answer really because we are all affected differently. From a personal point of view, I was monitored with levels at around 800 for 5 years (at 50, so much older) and just took aspirin, I felt well but the high platelet count led to coronary heart disease, nobody knew it was happening until I got chest pain, then I had to have stents and now take a whole raft of medication! I don’t want to worry you but if I had those 5 years back I would insist on having my heart checked occasionally. I am otherwise fit and heathy, not overweight, no junk food, gym twice a week, my cardiologist says my heart disease is caused by et. But that is not to say all et patients will be similarly affected. Keep your diet as low in sugar as you can and it will alleviate the fatigue and keep your heart healthy!

Best of luck

[Hidden in reply to SuekJ]

Hi Sue

Thank you for sharing a part of your story I find it helps. You have made me aware that I should see a cardiologist for a check up. Why do you say that we should reduce sugar intake? I know it is the cause of my weight gain. I crave it. Is there any other reason.

Regards and God Bless Anna

[Deefen]

I’m 62 and just on aspirin. I have no other symptoms, no fatigue, no headaches (unless it’s understandable fatigue that any ‘normal’ person would get too). I exercise every day (weights, cycle classes, yoga, HIIT) and stick to a ketogenic diet - so maybe this has helped me? I’m far fitter and more energetic than my other ‘normal’ 60+ year old friends - so it’s not holding me back. I still do long hikes, scuba-dive, etc; I’m not going to let this ‘disorder’ define me.

If this hadn’t been picked up on a blood test, I wouldn’t know I have it.

[Elzbietta in reply to Deefen]

I am so glad for you that you are leading a normal life. I did this from age 46 until now, 56 with levels of 900 to 1M and only aspirin but recently went in Hyderabad and then found out I had had a seizure probably they think caused by stroke. What are your platelet levels? ( I am very interested as neurologist has advised I can no longer doing any intense exercise including Pilates or Yoga but says I can walk swim and cycle. And I did try some mild Pilates and ended up with very severe muscle exhaustion)

Look forward to your reply. Cheers, Elzbietta

[Elzbietta]

Excuse typo: I meant to say I went on Hydroxurea.

[Deefen in reply to Elzbietta]

Lol! I thought you’d gone to India for some reason!

My platelets are about 700. I’m going to experiment with trying to reduce them using shiitake, ginkgo and other natural methods too.