Breathlessness

[Tartanlady]

I would be interested to hear if any body has the feeling of not being able to fill your lungs. Its making me so lethargic. Even when I am doing nothing.

[Scrollernut]

This is not to scare you but food for thought. That was one symptom of mine when I had COVID. It’s been almost 4 months and still have difficulty taking full lung filling breaths. It’s especially bad when I talk. Have you been tested? Would be a good idea to do so if nothing else but to rule it out. That’s what my doctor did and we both were shocked when it came back positive. I was very blessed in having a very mild case but still have the breathing problems. Let us know.

[Leonardo]

Yes- very much so and have done for several years - much worse following 2 significant pulmonary thrombosis events. I do various exercises which help a lot - yoga and Qi Gong. I am 83 - on hydroxycarbomide & warfarin.

Leonardo 24

[Tartanlady in reply to Leonardo]

Nothing showed up in my CT scan but they are putting me fir a CTPA scan??? Platelets 600's but stable. Aspirin 75mg daily.

[Otterfield]

Also don't want to scare you but I had this just before being diagnosed with MF. It was making me exhausted. That DOESN'T mean your disease is progressing as I'm sure there are many possible causes, but I suggest you have it checked out. Do you have a haematology nurse you could phone? I find them really helpful.

[Tartanlady in reply to Otterfield]

Had a bone marrow biopsy and it seems no progression and no fibrosis......mysterious!!

[katiewalsh in reply to Otterfield]

Hi. Has this continued? We’re they able to give you a cause? My MPN specialist who’s very good didn’t seem to think it’s related to my MF. My labs are pretty normal though. But I’d appreciate hearing more about you. Thanks, katie

[Otterfield in reply to katiewalsh]

No I'm not breathless anymore. Before diagnosis it was so bad I was admitted to hospital through A&E. It turned out my haemoglobin had dropped really low and my spleen was very enlarged, perhaps pressing on my diaphragm. Everything has improved on Ruxolitinib and transfusions when I need them - every four to six weeks at the moment. Hope you can get sorted - would be worth seeing your GP as maybe something unrelated could be causing it.

[SoledadBarcelona]

Bteathing exercise on the morning help it, nithing more. Even cold showers after exercising. Best regards

[Turfbeg]

Hi Tartanlady, since being diagnosed with polycaethemia and taking hydroxycarbamide and 75mg aspirin I have quite often experienced the feeling of not being able to fill my lungs properly. This tends to happen indoors but I have experienced it when out walking I find that breathing in as deeply as I am able and then holding my breath for a few seconds really helps. I haven’t sought medical advice as there is no regular pattern and it hasn't become worse,Keep safe,

Turfbeg

[Whitehair51]

I have noticed that I'm breathing a lot harder during the first 10 minutes of walking. And it does seem like it's a little harder to take a deep breath. I keep wondering if I'm over analyzing. I was diagnosed with ST 2 months ago.

[Dovme]

Have you considered it might be related to stress anxiety?

healthline.com/health/short...

[Tartanlady in reply to Dovme]

Thank you for the reply. Yes, I did wonder about stress anxiety and I dare say sometimes it maybe is but it never goes away. Even when I am in bed, relaxing on the sofa watching TV or playing with my grandchildren. Even now as I'm writing this my chest feels tight though to my back and I'm shallow breathing 😖

[ChattyPanda]

I think mine is due to anemia. I have had this issue ever since HU got my blood counts down. Now they are purposely keeping me anemic. My last ferritin level was 8. (15 is low normal). But recently my specialist sent me for a chest X-ray and an EKG just to check. They were fine. But maybe that’s something they should check for you?

[Fika500]

Hello. If your spleen is enlarged , it could be affecting your breathing . ( Many people with MPN have enlarged spleen) My husband has experienced thus - they say the spleen is pressing on his diaphragm . Although it us a very uncomfortable feeling , his SATS are adequate. It’s a question if getting used to a new sensation of breathing.

[Tartanlady in reply to Fika500]

Seems my spleen is ok in the CT scan.

[katiewalsh in reply to Fika500]

Do you mind telling me how large his spleen is? Thank you. Katie

[Fika500 in reply to katiewalsh]

34 cm on CT last year. Too big to measure on ultrasound

[Inca]

Yes 11 yrs of P V, always have this problem, I find yoga breathing exercises really help ,saw my consultant last month ,he said my breathing was much stronger.Of course all my life I have bred horses ,have dogs ,cats,not exactly good for the lungs,except I am outside a lot in all weathers,don't like central heating etc,it's important to keep air flow in the house.Defo the yoga breathing,try if you haven't already .Best to you.

[Wyebird]

Yes check out hypoventilation syndrome. I was diagnosed with it after Et diagnosis. . A few sessions of physio made a huge difference. I’m also breathless because of low haemoglobin.

[MaggieSylvie]

I get it off and on, even before I was diagnosed, and never considered it was related to MDS/MPN. It's more to do with emptying the lungs before you fill them. It could be stress related, too.

[hunter5582]

As others indicated, there are some specific things your care team will need to look at to figure out what is going on. Dyspnea (shortness of breath) is a known side effect of hydroxycarbamide and some other medications as is asthenia (fatigue). It can be tricky to figure out since these symptoms can also be caused by MPNs and other diseases. Since this is a symptom that is affecting your quality of life, follow up ASAP with your hematology team and possible with a pulmonologist if that is indicated.

[Pte82]

Tartanlady, your breathlessness may be caused by lactic acid. Thiamine is an essential co-factor for the enzyme pyruvate dehydrogenase that allows oxidation of pyuvate to acetyl CoA. Lactic acid is an impotant energy source for tumors and because cancer cells consume so much glucose they end up producing lots of lactate. Look into a possible thiamine deficiency.

ncbi.nlm.nih.gov/pmc/articl...

sitn.hms.harvard.edu/flash/....

[katiewalsh in reply to Pte82]

Hi. I read both studies but there’s nothing about shortness of breath. Can you provide something that discusses that problem? Thanks. Katie

[Pte82 in reply to katiewalsh]

I hope this shows the connection. Lactic acid created in your body before running may be at a level sufficient to cause breathlessness but not at a level to generate more symptoms.

advancedorthosurgeons.com/u...

[katiewalsh in reply to Pte82]

Thank you. Could you have that & still have normal blood work? I just had a complete physical which showed no problems with kidneys, liver, etc. Katie.

[Pte82 in reply to katiewalsh]

Of course. Your body is not "normal" when a MPN is present and the important thing to take away from this is the use and contribution of lactic acid by cancer cells furthering progression and increasing treatment resistance, Research how to clear lactic acid quickly from your body. .Vitamin B1, NAC, milk thistle, and magnesium are a few.

frontiersin.org/articles/10....

[Cja1956]

Ever since I was diagnosed with a MPN 12 years ago, I have experienced shortness of breath. I did not look this up and I ended up going to a cardiologist but he couldn’t find a reason for it. I also thought maybe it was due to anxiety. But after doing some research, I saw that some of the medications I was taking for my ET may have been the cause. When I became anemic a few years ago, my breathlessness became even worse and eventually I was diagnosed with MF. My hematologist I have now I sent me to a pulmonologist who did lung function tests, and everything was fine there too. My humble opinion is that it is a combination of the disease and the medications that we take. I’ve been on Hydroxyurea for 12 years, As well as Jakafi and anagrelide at various times. I am also going through a difficult period now with breathlessness. I have tried yoga and walking for exercise, but nothing really helps. I wish you all the best.

[Mica11]

Yes, I have it off and on. Had chest X-ray and EKG, all normal. I think it's the meds, Hydroxy and aspirin. GP and hospital couldn't find any other cause. I can be talking and lose the end of a word because I suddenly have no breath left. Also worse when walking and talking at the same time.Yet, oddly pre lockdown I attented a Circuit Training class which was really physical and I had no problem with my breathing during or after.

I put it down to just one of those things and live around it.

[katiewalsh]

Hi. I also have ITV& so far they don’t the cause. They tried to do a right heart catheterization to check for pulmonary hypertension but my vena cava was so blocked by damage from long ago blood clots that they couldn’t get into my heart. If they haven’t checked for that you might ask them to. Good luck. Sure sounds like a common problem based on the responses. Katie