Breathing and standing!

[RoundTheWorld]

Hello. A disparate couple of questions for you with longer term experience of PV please?

I'm having a slightly uncomfortable breathing symptom. Have had it before but it goes after a few days/weeks and doesn't stop me exercising; it's just unpleasant. Previously thought it was due to low ferritin (high normal Hb) but before my recent PV Dx I had an iron infusion, so think my ferritin levels are probably ok now. The issue is a feeling of not getting enough air - I frequently want to take v. deep breaths or yawn but only briefly feel as though I've filled my lungs. Could it just be anxiety? I'm not hyperventilating, my watch says Pulse Ox 94% and I have a low allele burden (20%) so don't think it's anything too serious from a PV perspective; just wondered if it is familiar to anyone else? It's not from treatment as I had it before any of that.

The other thing I've vaguely been wondering about is that if I stand for a long time without moving around much (usually when ironing!) I start to feel 'off'. Hard to describe what I mean but it's a bit of full-headedness, overheating and again sometimes feeling a bit low on air. Could of course just be that I dislike ironing...

Thanks. Hope you all have a good weekend

[hunter5582]

It is hard to say what exactly this is. One possibility is a side effect from the Pegasys. Suggest that this is something you should call your MPN care team about promptly. rxlist.com/pegasys-drug.htm

[RoundTheWorld in reply to hunter5582]

Thanks Hunter - I’m actually sitting waiting to have my first injection so it’s not that! I’ll ask the nurse though. Hope you’re having a good week yourself.

[hunter5582 in reply to RoundTheWorld]

Glad to hear that it is not a PEG adverse effect. May be something totally unrelated to the MPN and its treatment. I just took my daughter-in-law to the ER for tachycardia. Turns out she had pneumonia in one lobe of her lung. Good thing she had it checked out before it got worse.

[RoundTheWorld in reply to hunter5582]

Well done to you both for getting it checked! Hope she feels better quickly.

[saltmarsh]

Those are definitely uncomfortable sensations. I think it wouldn't be a bad idea to have your MPN specialist run a full panel of bloodwork and if that's inconclusive, consider seeing a pulmonologist and/or a cardiologist. Good luck and best wishes.

[RoundTheWorld]

Thanks both of you.

More generally thank you forum friends for the 'low and slow' advice - there was briefly a mix up re. dose but what you had said made me question it. The nurse and I were both pleased to realise before I started a little bit high and fast. Your experience has been such a help in getting up to speed with everything.

[LittleLuna]

hi

I have PV and one of my symptoms is shortness of breath. The sensation can vary but feels like I am not getting enough oxygen, short of breath on little or no exertion. It can affect me at night and wake me. When speaking with MPN Specialist it can be one of those odd symptoms. I have mild asthma apparently and can use Ventolin, which does not improve this SoB issue at all.

Worth checking out other avenues though to rule out anything else but if nothing found could be one pf the many strange symptoms we have.

[RoundTheWorld in reply to LittleLuna]

Thanks LittleLuna. Interesting that your MPN Specialist acknowledges it. I had lots of checks when I noticed a spate of it a few years ago and nothing obvious came up then other than iron deficiency, which now shouldn’t be an issue.

[Minify]

if you are having trouble “getting your air”, you should see a doctor urgently. . I’d be worried about pulmonary emboli.

[Spanelmad in reply to Minify]

She has an oxygen saturation of 94%

[RoundTheWorld in reply to Minify]

Thanks Minify. I don’t think it’s acute as I’ve had it before and it’s mild, altho’ uncomfortable. The nurse yesterday checked bp, oxygen saturation and pulse and proposed getting another FBC if it continues. I’d be more concerned if I hadn’t had it before - will go back if it worsens.

[Ebot]

I had something similar in the past during a trying pregnancy. Everything checked out as normal and I was referred for some ‘learning to breath’ sessions. For some reason I’d got into bad breathing patterns which resulted in the kind of sensations and behaviours you describe. It was possibly set off unconsciously by some anxiety I wasn’t really aware of and then it became a habit.

On the basis your iron levels, oxygen sats, blood pressure etc etc is all fine maybe explore how you breathe. Deep breaths aren’t always ideal and you can unwittingly fall into bad habits.

As for the ironing - yes, it might just be the ironing!!! I keep the windows open wide and listen to something upbeat. And do a bit of (tame) dancing:)))

[RoundTheWorld in reply to Ebot]

Thanks EBot. Wise words re. the ironing! I’ll try the dancing

Re breathing - I am open to the idea that it could be at least partly related to anxiety or poor habits so will continue to try to minimise those.

[Aldebaran25]

Hi! I think I recognise what you mean, and have occasionally suffered from something similar, like I am short of air although my airways are clear and I am breathing normally, or the desire to cough with nothing to come up and no throat irritation. I’ve had ecg’s and a lung functionality test , all normal. I am not asthmatic and my blood oxygen saturation is good . I am a runner and admittedly do not perform as well as in the past but I have never had this short of oxygen feeling whilst running or exercising. You should of course pursue your own investigations, but personally I have classed it as a PV symptom.

[RoundTheWorld in reply to Aldebaran25]

Yes - I find it interesting that while running it is usually fine, but it sometimes returns on the cool down walk. Possibly because I’m distracted while running though.

[PupsBestFriends]

I've experienced this shortness of breath daily for the past 2 1/2 years, and it began just as I was diagnosed with PV. Sometimes it happens when I'm not even active. I could be sitting and watching TV when suddenly it feels as if I'm out of air, gasping with deep breaths. It may last only a few minutes, or hours can pass when I can't seem to fully catch my breath. It often leaves me feeling weak, dizzy, and exhausted, sometimes for the rest of the day. I've never had lung or breathing issues before, and I've had cardiology evaluations, lung scans, bloodwork to ensure iron levels are sufficient, and much more in a search for a solution. It started long before I began Besremi, and continues even with controlled blood counts.

In regards to standing in one place for long periods, I get dizzy, full headed, weak knees, and malaise. Then my left thigh turns into one huge cramp, and eventually my feet start going numb. Sorry to hear your having these troubles, but it helps to know I'm not totally crazy (at least not for that reason).

[RoundTheWorld in reply to PupsBestFriends]

Thanks for your reply. One of the tricky things is knowing what is or isn’t likely to be down to the MPN and when to pay attention and when you can safely assume it’s harmless. So many of us seem to have struggled to explain unusual chronic symptoms - I certainly have an element of relief that the diagnosis explains so many oddities.

[LIGEBA]

Hi RoundTheWorld. I had that feeling of not getting enough air prior to being diagnosed with PV. It started after I had sepsis and an emergency surgery, where is when my seemed to start but didn't know it. I would tell my PCP and other doctors I felt like I couldn't take a full breath. Nothing hurt and my oxygen is always 98% - 100% during the day, even during the times I was experiencing this. I had the usual pulmonary tests and saw a cardiologist. Doctors brushed it off and said they had no idea what it was.

It was just 1 of the early symptoms before the PV diagnosis. I don't get it anymore but not exactly sure why. These are the things that changed that may have affected it: started phlebotomies, started low dose aspirin, statin, bp meds, & CoQ10, started PT where breath control is heavily emphasized, and because for some reason my oxygen started dropping down into the 80s at night periodically (after I started phlebotomies), I asked my pulmonologist to start me on nightly O2. Since insurance will not pay for a portable oxygen machine since my O2 is so high during the day, I also now have a portable CPAP that insurance will pay for when I travel (so frustrating).

I am not sure if any of those things made it go away or if it did on it's own. Either way I am grateful because it's an unsettling feeling when you feel like you are not getting enough air. I truly sympathize with you and others who suffer from this.

I also suffer at times from the full-headedness symptom. It's also very unsettling and I cannot really determine why it happens but have read it is a symptom of PV. It happens a LOT less now that my HCT has been fairly well controlled with the phlebotomies so I feel it may be related to the thick blood not passing through the small vessels in my brain very well.

Hope you find some things to relieve your symptoms. I know someone else mentioned the breathing. Perhaps give that a try.

[RoundTheWorld in reply to LIGEBA]

Thank you Ligeba. Both are uncomfortable but thankfully usually not too concerning so far. Interesting to read other people here have had similar experiences. I’m hoping treatment will help reduce some of the odder symptoms that are hard to explain to others. Keep meaning to keep a diary to help track what helps and doesn’t…

[LIGEBA in reply to RoundTheWorld]

I actually keep a spreadsheet with MANY tabs for not only symptoms and what may have helped reduce or eliminate them, but also each dr.'s information and things we've discussed during our visits, each potential medication for PV that I may eventually end up on, it's side effects (both short term and long term as data allows), other illnesses I've had/have and any relation to PV, etc. By doing this, on the days/weeks my brain isn't working quite right, I have something to reference that helps me keep track of it all.

[Smithjoa]

This is my experience in case it’s useful. I had shortness of breath for years, not awful but noticeable. I have now clued in that it is lack of oxygen. It can damage organs and cause splenic infarcts, which I had. An Apple Watch will not provide constant monitoring and looking back I should have paid more attention to the oxygen monitor constantly going off when I was in the ER for the splenic infarct. I suggest a chest CT and not ignoring any findings of atelectasis (it’s common finding on a ct), or other such things. I’m doing more exercise and deep breathing etc. This is just a suggestion of course and your case may be very different. I just don’t want you to ignore it for years.

[RoundTheWorld in reply to Smithjoa]

Thank you Smithjoa. My GP did say I could have a chest xray but they did one last time I noticed it a lot and it was clear then. I appreciate your advice not to ignore it if it worsens and will keep an eye on it. Hope it continues to go well for you now. I’m certainly getting the message that moderate exercise balanced with relaxation is important for MPN patients.