Breathlessness

[ciye]

Struggling with breathlessness, I was hoping interferon would help this, but doesn't seem to be. I have ET and has no says it's not a symptom.

[ksos]

Hi Ciye -- I' have the same thing, and people here also written about feeling breathless, so you could do a search to see what's been said.

My MPN doctor at first said it wasn't a symptom of ET, and recommended a full range cardiac and pulmonary tests to rule out other causes. When hey all came back normal , he now said it is likely related, but rare. I thought it made sense to do all the tests because it could have been something else, so that's an option to consider.

I'm also on interferon for ET -- have been for a little over a year and in just the last couple of months, I have seen an improvement and don't struggle as much. It still happens when I'm really fatigued, but certainly better than when I was just on HU. How long have you been on interferon?

Good luck with this,

Kim

[ciye in reply to ksos]

7 weeks, respiratory clinic have organised some test, got a phone consultant for go next month. Breathlessness has been an issue for a long time.

[hunter5582]

Shortness of breath can be associated with ET. It might be a sign of blood clots, so it is something to follow up on. It could of course be due to other things.

Your hematologist should know this and follow up. If not, suggest consulting with a MPN Specialist who knows more about MPNs. Here is a list. mpnforum.com/list-hem./

[Bridie123]

I have ET and been breathless all the way through (5yrs November) am on hydroxycarbonide

[Yvette49]

I also have breathlessness, I have PV on interferon….

[Planti]

I started on interferon alpha in March 2021. I noticed shortness of breath, mild but noticeable with only a little effort. I am not a marathon runner by any means and smoked cigarettes but stopped 34 years ago. The breathlessness came on after I started Pegasys though I was on HU for 3 months at 500mg per day just before that.

I will be asking my MPN specialist about it at my next appointment in October. I will ask for some investigations as it is not going away, though it is not getting worse.

There are reports of interferon induced pulmonary problems but pretty rare. It may be however that mild breathlessness is just not paid any attention if we don't complain to our doctors.

I think it is worth mentioning and good to be very clear with specialists about the severity and if it limits activities or is worsening over time. Examples of exactly what you notice are good to give. Just my take on it.

I hope that it is not impacting your life, but if it is, push a bit harder.

Thanks for writing and hope you get some answers and relief.

[ciye in reply to Planti]

I am going to push, with luck I may be lower than 10 in the queue when I ring doctors.

[hunter5582]

Persistence overcomes resistance! I would opt for a good book or something entertaining on the PC whist waiting your turn. I often have better luck with the patient portal than the phone. hope you get through to someone soon.

[Planti in reply to hunter5582]

Well said friend.

[Cja1956]

I’ve struggled with breathlessness since the beginning when I first got diagnosed with ET in 2008. No one told me it was one of the symptoms. My doctor told me not to google it. I went to a cardiologist and had a stress test and wore a heart monitor for 3 days, but nothing was wrong. I suffered with palpitations, shortness of breath, and dizziness for years. I still have them, but not as bad. I also don’t get so much anxiety because I know what is causing them and I’m being treated for my illness, which is now post Et Mf. I hope you find some relief soon.

[EPguy in reply to Cja1956]

Add my vote to mild breathlessness and palpitations and dizziness. I've had palp on-off for 30 years, but it has returned since starting HU last year.