Out of breath

[Windy51]

Hi I have ET and I am on Hydrea does anyone get out of breath on it please

[Kari1961]

Hi Windy51.

I have PV and take Hydrea. I started to suffer breathlessness when walking up a slight incline or stairs shortly after my dose was increased - I had never experienced being short of breath before.

My haem arranged a chest x-ray and ECG to rule out other issues, and they both came back clear. He did however say that he wasn't convinced it was due to HU. Although he did lower my dose, and since then I've been fine again.

It could be a coincidence and perhaps the breathlessness was due to seasonal allergies, I'll never know for sure.

Maybe best to speak to your Haem or GP about it.

Kari

[Windy51 in reply to Kari1961]

What dose are you taking

[Kari1961 in reply to Windy51]

I take 500 mg Mon - Thur and take 1000 mg Fri to Sun now. I was taking 1000 mg Thur to Sun before.

🙂

[Mwalimu]

Yes, I do. However, it is not clear at the moment that it is definitely due to HU. It was being investigated before Covid/lockdown and you have inspired me to go back and try to get it sorted out! An ECG did not reveal anything abnormal. My GP more or less dismissed the idea it was related to HU but suspect that was due more to her lack of awareness re MPNs than anything else. I find it debilitating: I don't like walking with other people and find I avoid exercising, using the car when I could easily have walked. You've nudged me in the right direction - thank you! Sallie

[Windy51 in reply to Mwalimu]

I’m glad

[Mazcd Partner MPNVoice]

hi Windy51, one of the common side effects listed for Hydrea is: approximately one person in 100 up to one person in 10 will experience some of the common side effects: reduced red blood cells, if your red blood cells drop too low (anaemia) you may notice that you are becoming breathless and tire easily.

It would be a good idea to discuss this with your haematologist and perhaps also your GP. Best wishes, Maz

[yarrowleaf]

Hi Windy!

I am not on Hydrea, but Pegasys, but I have the same problem.

I think it is because our medicines create waste products while "killing" blood platelets

-- or rather: dead platelets are waste products which the body gets rid of, and in any cleaning process lots of oxygene is being used

I started bicycling a lot (30-60 km a day). First I felt like dying--lol, but after some months I feal loads better. Really !!

There are medics which can oxygenize one's blood, but why using more chemo when moving (and enjoying nature) can do the same ?

Sorry for you-- hope you will get better !!!!!Greetings-- Yarrowleaf

[Minu68]

Hi Windy, That isn't something I have experienced, and sounds unpleasant. I'd get it checked out, especially if it has come on recently. I smoked for the majority of my life and have now been on Hydroxy for a year. It might be that it is a side effect, but don't think you've mentioned it before? Let haemologist know for sure in my view.

Take care and let us know how it goes if you do get it checked out xx

[Doggy1903]

I do tend to be a bit breathless, even though with good treatment, hb and platelets managed are well..

[Murdoch01]

I have ET Jak2 and have been on Hydrea for 4 years, the breathless got so bad with chest pain and dizziness that I was sent for a stress test and a ET scan of the heart. Amazingly no problem with the heart, they won’t admit it but I believe it is the Hydrea that causes it

[Scrollernut]

Interesting question....I’m on 500mg Hydrea for a year past February and have so much trouble breathing sometimes I have to stop what I’m doing even talking BUT I had Covid last September and that’s when the problem started. Both drs are certain that’s the cause of the breathlessness. No one contributed it to the Hydrea. I’m one of the “long haulers” who still have difficulties....breathing problems and un-relentless headaches that meds won’t touch. Also cognitive issues. There’s so many side effects from Covid that drs don’t understand yet. It’s difficult to know what is causing all the problems....maybe I’m actually getting a triple whammy....part Covid and part Hydrea , part ET. Tis a mess!!!🥴🥴. My friends and family know so they just wait for me to catch my breath and then we continue.

[hunter5582]

I think you may have already heard this, but dyspnea (short breath) is one of the common adverse effects of HU. This is cited from multiple sources. As you can see from the responses, others experience the same thing. Unfortunately, some also experience doctors blowing off their concerns about the adverse effects and disregarding the fact that dyspnea is a well known HU adverse effect. The good news is that the problem may resolve at a lower dose. If that does not work, then there other options to treat the ET,

[MPNBlog]

Like Murdoch01 I too have had breathlessness and chest pain. But like yarrowleaf I am also on Pegasys (PV dx 2017). I've been in Emergency 3 times, each time any chest pain is assumed heart attack until that is ruled out. All (endless) heart tests clear. But on one occasion I was diagnosed as pericarditis. Unsure if it's the Pegasys, so I went off it for 4 months. Have reintroduced it at 45 ug every 3 weeks (platelets were going up) and so far OK, but breathlessness has returned. Pericarditis was treated with colchicine and each time I try to taper off colchicine, chest pain returns, so I'm staying on it for now - 10 months since originally starting it. I've recently learned pericarditis can tend to re-occur. Unclear if Pegasys is the cause of breathlessness and chest pain, or if it's something about the PV. So many unanswered questions. Hope you get some resolution. Best wishes.