Hi everyone. I am waiting on more tests to confirm Polycythemia Vera. I see from all my research a symptom is breathing issues. Over 20 years ago I was diagnosed with asthma and use preventative and Ventolin. I have always felt this is not asthma, peak flow is perfect and know what asthma looks like as my mother has it.
In the main i get short of breath going up stairs and when I lie down. It wakes me up and I need ventolin, which I feel does not relieve it much.
Sorry for waffle - in short, does anyone else have this particular symptom and how is it treated?
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LittleLuna
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Shortness of breath is a PV symptom. I tend to get it when I climb stairs or if I'm bending over, gardening for example and during brisk exercise. I've never had it happen when lying down though. Maybe it's something you should raise with your GP with you being treated for asthma for so long.
Well it’s possible that there may be a link between PV and breathing but I have never heard of that in the last 12 years I have been studying my PV, it could be due to something else unrelated to PV, I think I would check out other causes, good luck
Is there a good link or site which identifies symptoms. There are some standard symptoms but quite an extensive list I have seen on some sites. Its whether they are true or not .I need to find them again and will send link
Shortness of breath is something that comes up here on occasion for all mpns. I first noticed my breathlessness in 2014, just a few months after my ET diagnosis.
In 2019 I learned my symptoms are heart related but despite extensive testing of heart and lungs I don’t yet have a diagnosis. They don’t appear to be MPN related but with the help of my MPN clinic I’m now on a list for further testing at a specialist centre looking at microvascular and endothelial dysfunction.
It took me quite a while to raise my shortness of breath seriously with anyone so, based on my experience, I would urge you to clearly list your symptoms with your GP and haematologist. My GP can also be dismissive so I was very glad of haematologist support.
Shortness of breath (dyspnea) can be a symptom of PV. You will find this from multiple sources.
"Symptoms include lack of energy (fatigue) or weakness, headaches, dizziness, shortness of breath, visual disturbances, nose bleeds, bleeding gums, heavy menstrual periods, and bruising."
This does not mean you do not have asthma. These conditions can cooccur. In fact, people with MPNs are prone to a host of inflammatory conditions. MPNs are at the core inflammatory disorders. The deregulation of the JAK-STAT pathway causes the body to make too many inflammatory cytokines. This causes a host of secondary symptoms and can exacerbate "unrelated" medical issues.
Do be aware that chronic hypoxemia (low oxygen in blood) can cause secondary polycythemia. Your hematologist will be factoring this into your assessment. One of the first tests your doctor will have done is to check for the JAK2 mutation, which 95% of people with PV have. You should have the results back soon.
Hi. Thank you for this. Very concise info. I appreciate it. I have had positive JAK2 markers in first test, they mentioned two JAk2 numbers which I cannot remember but have redone JAK2 to clarify something, not sure again what that is. I will have my questions and notebook at the ready for my next appointment for sure.
That sounds like they may have run a JAK2 Quantitative analysis. This will show the % of the hemopoietic stem cells that are JAK2 positive vs the remainder that are wild-type (normal). The first test is often a qualitative test just to see if the JAK2v617f mutation (written as Val617Phe or V617F) or the JAK2 exon 12 mutation is present. The % of cells with JAK2 is called the mutant allele burden or variant allele frequency. It does bear on the status of your MPN.
Please do let us know what you find out. All the best.
Hi, when first diagnosed with ET I too suffered shortness of breath and I’d collapse. A few trip to a and e revealed nothing. Eventually a lung function tests showed I was breathing wrong 24/7. The specialist believes I had it for years but having ET brought it to the foreground. The breathing exercises helped enormously. I’m not saying you have what I have / had just that the exercises work. Google breathing exercises it might take a while to get it right and might help.
Hi there. There have been times in my ET / PV journey when I have really struggled with shortness of breath and this usually coincided with extreme fatigue and really ‘bad numbers’, especially high platelets and haematocrit and low ferritin.
Much of this resolved once my platelets and haematocrit levels were brought under control with Hydroxy and all my iron markers were normal. Certainly iron deficiencies alone can cause breathlessness.
I’m really much better but do notice I struggle a bit if I’m out ‘walking and talking’. I put it down to not being fit enough but to be honest, I’m not sure if the PV isn’t slightly to blame.
I get breathless much the same as you, switched from hydroxy to Interferon which didn't help much, my had No doesn't believe the ET causes this I do the breathlessness pre dates both my lung surgery and weight gain, but neither haemo or go seen able to look past this as cause.Getting really frustrated with both. The breathlessness started about the same time as my platelet count started to rise about 15 years ago.
This probably is not connected but thought I would mention it anyway. My breathing improved immensely when I started aspirin. Could there be a connection? Anti inflammatory helps possibly?
Might be worth seeing if your GP can arrange an Ultrasound scan of your spleen to check size of that- if it is enlarged you can feel more full and could be pushing up against your diaphragm a bit when lying at night. Being low in iron likely won't be helping.Agree re above is good to get checked out from cardio viewpoint too especially if you are getting any ankle swelling with it... Good luck
Hi, I am post Et Mf, Having been diagnosed with ET at age 52. But that was in 2008. At the beginning I had very bad shortness of breath and like you it got worse when I was laying down. I didn’t attribute it to ET back then until I learned more about it and it definitely was a symptom. I also thought I had asthma and I had many tests but everything checked out. it got better with treatment over time.
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