Hi everyone,
I have PV. I'm noticing for the last few months that I've been feeling just a bit out of breath and speaking more slowly sometimes because of it. I hate it because it makes me sound old or like there's something wrong with me.
I'm guessing that this is a PV /ET issue. Can any of you relate to this? Do you also find yourself speaking more slowly because of a bit of shortness of breath?
Hi there. I’ve had periods since my diagnosis when I’ve had marked breathlessness. Usually accompanied by extreme fatigue. I definitely couldn’t walk and talk! Even regular conversation around the table was trying at times. I felt like an ancient person. Not good for one’s self esteem!
The periods usually coincided with times of severe anaemia and very low transferritin etc counts. So, first I would get your bloods checked out. Secondly, make sure you are well hydrated. I find that can also affect things.
Even now when my bloods are largely good I can still get breathless. Currently I’m putting it down to less walking / exercise due to shielding which means walking at a pace and talking can sometimes be a bit of a struggle but it’s so frustrating!
Yes I get that and have put it down to low iron levels and have B12 injections to balance that out as I dont absorb B12 through my stomach. I found walking helps but thats hard at the moment due to shielding. The heat also affects my breathing
Hi Jenny_F... my iron levels are intentionally low (phlebotomies) but no one ever mentioned B12 to help offset ... I thought taking B12 was not a good idea with PV... was it your doctor who said it was ok? I would love to get on B12.
I think I might be a special case as I had medication for another condition that stripped my stomach of the intrinsic factor that absorbs B12 in my stomach. If I didnt have the injections I would be in a double anaemia situation. My consultants are well aware and monitor my full blood count. It may be that your B12 levels are fine if you are eating a healthy diet.
Going to my Gp with breathlessness was how I got diagnosed with PV. Because there was no obvious reason for it a blood test was done. That was 2017. It's still a problem. I have to pause mid sentence to take a breath.
Carol
I have breathlessness for years even without doing any effort or without a reason for it, however couple of months ago I started doing breath exercises, which helped a lot. Now I experience the breathlessness only when I'm doing sporty activities.
Hi -- I have problems with breathlessness, too. What kind of breathing exercises have you found helped?
Hi, I have ET and get breathless, sometimes randomly when just talking.
Heat / humidity also makes me breathless
I have ET and suffer from breathlessness. My peak flow was monitored and most of the time reached around 200. No explanation has been found for it. I don't like walking with other people because I want to go at my own pace. About to start some breathing exercises suggested by a relative who is a professional physiotherapist and am hoing to see an improvement.
It can be really hard to sort out whether the dyspnea is the result of the MPN or a side effect of the treatment. More severe iron deficiency can effect breathing. Medications like hydroxyurea can cause dyspnea as a common reaction. It may take a bit of detective work to sort it all out. I hope you have a MPN-specialist doc to consult with.
Hope you get it all sorted out soon. Please let us know what you find out.
There are probably a few possible explanations. In my case, my haematologist found that my Folic Acid levels are extremely low, making my haemoglobin drop dramatically as well as my platelets. I am 2 1/2 weeks into treatment with folic acid supplements and am aware of some improvement already, though I still have a long way to go. I believe B12 deficiency has the same effect. I have also reviewed my diet and increased green vegetables, as well as having Marmite, which fortunately I love!
I have post-ET MF and have suffered with shortness of breath for years. I didn’t associate it with ET at first and eventually, I went to an allergist because I thought I had asthma or some other lung condition. After all his tests, he said my lungs were fine and I had no asthma. I did some more research and found out on my own that shortness of breath is part of our condition and also could be a side effect of some of our medications. So, yes,what you are experiencing is normal but you should tell your hematologist about it because other doctors don’t know much about MPNs.
Thank you so much, all of you! This list has been SO helpful to me in validating what I feel, so I feel a little less crazy, a little less alone.
I'm just about to go to for my regular bloodwork, so I'll be interested to see if the breathlessness and need to talk slowly correlates with low iron levels. I'm betting yes.
Summing up your responses, there were also good ideas from all of you, including deep breathing exercises. A close friend who is a yoga teachers counsels me that when I feel fatigue I should go outside for a minute and do deep breathing. Sounds like that would help with the shortness of breath too.
I have been trying to eat green vegetables every single day. I think it may have helped me feel a bit less fatigue, though it's hard to say.
Finally, I love the marmite idea! I've never tried it, but will definitely try it. I note that it's also vegetarian and the iodine level helps iron absorption.
Thank you, everyone!
Dyspnea is a common symptom among MPN sufferers. However, it’s also a common COVID symptom these days. That’s why I would recommend anyone to get an oxymeter. It’s a cheap device and worth buying to make sure our shortness of breath is not related to an infectious disease.
Hi souplover (I love my soup too!). Yes I know what you mean ... I feel that at times .., not always but I think it comes from PV fatigue and for me it’s also sometimes my enlarged spleen pushing up into my stomach. I sometimes feel like a have to take a bit of a deep breath in the middle of a sentence. It was scary at first but I’ve gotten used to it ... for me it’s been going on for about a year .... was diagnosed 2 years ago. How long ago were you diagnosed??
Hi Keiks,
I also love to cook soup, which is my comfort food (in cold weather). I was diagnosed a little over a year ago.
My hematologist has been terrific, but she's not as cued in on the symptoms of PV. I can see that since she is treating far more serious conditions, she's not worried about a little shortness of breath.
Souplover ... I feel the same about my hematologist. But then I realized that PV is not as common as other MPN’s and not all PV patients suffer all the same symptoms, that’s one reason why PV is hard to treat, PV is very complex and not a lot is known about the disease except for what it does. Research is being done more intensely now but I think it’ll be while before we know more about all the symptoms. We have to learn as much as possible on our own. Some reports mention symptoms that a dozen other reports may not mention. My nephew was diagnosed with PV at 29 yrs old and 3 years later I got diagnosed and we don’t have all the same symptoms.., age is also a factor. And also they say that PV is not hereditary but it is familial ..... his maternal grandmother had PV and I’m a paternal aunt so there’s a lot to learn still.
Your story about your nephew, his grandmother, and yourself, makes me wonder whether there are environmental factors at play. Are you all from the same town?
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