Instow1

[Instow1]

dear friends

Since diagnosed with E T 2 years 6 months ago I notice I get breathless easily.

have anybody else noticed this

Thanks for any reply

[hunter5582]

Shortness of breath (dyspnea) can occur when there is a clot that goes to the lungs, but that does not sound like what you are describing. If I recall correctly, you are taking hydroxycarbamide. Dyspnea is a common adverse effect of this medication.

Suggest you be sure to consult with your MPN care team about this issue.

All the best.

[Instow1 in reply to hunter5582]

thanks hunter for your reply

[Rem31]

It’s something that comes up here from time to time and there’s probably a variety of causes. Turns out it’s a heart problem in my case.

I first noticed breathlessness 4 months after my ET diagnosis and starting HU 9 years ago. It was noticeable when walking fast and especially if talking at the same time.

Around 3 - 4 years ago I had extensive lung testing and all good there. The respiratory consultant suspected angina so I was passed onto cardiology department. Subsequent heart testing has showed my heart and it’s vessels are apparently healthy, until I exercise. In the past couple of years I’ve realised cold weather and sudden stress are triggers too.

The first cardiologist didn’t have a diagnosis and so I’m now in the care of a specialist cardiology team. They have come up with a probable diagnosis of vasospasm but no cause yet. My tests are ongoing but moving slowly due to covid disruption and long waiting lists.

When I transferred to the current team the possibility of endothelial dysfunction was raised and I do wonder if there could be a crossover with my MPN. That’s my story so far on what started with a shortness of breath symptom.

[Instow1 in reply to Rem31]

thank you for your reply

[Itch]

hello, I empathise with your breathlessness. I have PMF probably for ten years or so, diagnosed six years ago. I also get extremely breathless with no obvious triggers. I’ve had lung test including for blood clot; saw a Cardiologist & nothing abnormal there. I have asthma, so inhalers increased with no benefit. My Haematologist doesn’t think the breathlessness is caused by anaemia - so I now just cope with it, as no cause or treatment. Good luck, I hope things improve for you.

[Instow1 in reply to Itch]

thanks for your reply

[Instow1 in reply to Itch]

thank you for your reply

[Instow1]

thanks for your reply

[Imkerin]

As others have suggested, please do get breathlessness checked out. In my case venesections resulted in iron deficiency. The breathlessness was initially understood to be a side effect of low iron. However March this year diagnosed with lung tumor restricting bronchus, hence the breathlessness.

[Instow1]

thanks for your reply

[Instow1]

thanks for your reply

[Mica11]

I had breathlessness and was sent for scans on my heart and lungs. Came back all clear and that seemed to be the end of any investigation. I struggled even trying to take my dog for a short walk and after only half a length of the swimming pool I had to turn over and float until I could get breath again. I sometimes had to stop talking mid sentence too, just no breath to speak. A few months later my GP contacted my Consultant after they received my usual blood test results for my GP records and he questioned my consultant asking if my medication had been altered due to my anemia? Only after my GP's intervention did they reduce my meds which slowly helped with my breathlessness and my platelet counts were still in the acceptable zone. Thank goodness my GP was on the ball.

[Instow1]

thanks for your reply