PV and breathlesness

[mark382]

I've had PV for 5 years and managed by venesections and aspirin. My bloods are all OK for me. In the past when my GP did a blood test he thought my body was short of iron, but my Haemo said they were OK and did another venesection. I have noticed that I am getting short of breath when I go up hill. I've had a couple of ecgs and that was OK, had an ecg on treadmill yesterday and even though I couldn't complete the full test for them to get all the information they wanted, there wasn't anything obvious jumping out. Due to go for an ultrasound test to make sure walls of the heart are moving properly. I'm thinking along the lines if my body is short of iron, then my haemaglobin level is low (like being anaemic) and this may be the problem. Anybody else been short of breath with PV which is being managed. Thanks Marc

[Geoff_mpnfamily]

Hi mark, yes unfortunately its apart of the parcel with polycythaemia, the haematologists like to keep you a bit anaemic because its slows the red cell production. Unfortunately it induces miss shapened cells too.

Chest pain is very common with polycythaemia too though contiuing with check is always wise.

I find i often get out of breath badly at the simplest of jobs. And more recently I could just be sitting their feeling breathless for no reason at. Then the sweats come over me randomly too.

I hope this helps.

Geoff

[mark382 in reply to Geoff_mpnfamily]

Geoff, thanks for the reply. Reassuring to know that others have the same problem. Thanks Marc

[Aime]

Hi Guys, I have PV too and find I go through spells of feeling breathless when walking. My body temperature control is definitely not working properly either. I come out in sweats usually more in the morning if doing small jobs. Regards Aime

[NewBloom in reply to Aime]

Hi, I also have PV with the same symptons as you, albit sweat mainly at night.

[mark382 in reply to Aime]

Aime thanks reply. I to tend to sweat a lot with even when doing light tasks. Also spend half the night out of the bed covers as I get too hot - doesn't matter if it's summer or winter. I've been in meetings were others have had thick jumpers and coats on and I've been in a short sleeved shirt.

[sand-bog]

Yes often feel breathless, but luckily don't suffer from sweats although come to think of it I have woken up in the middle off the night a couple of times recently in a bit of a sweat. Hadn't really connected it before! How dumb can I be ......

[mark382 in reply to sand-bog]

Sand - bog thanks for reply.

[ilc72]

Hi Marc

Dependent on the type of PV you have, rendering you anaemic or Iron Deficient is generally the goal. If you only produce excess red cells then it is really imperative that you are rendered Iron Deficient.

Iron is a key component in the creation of red blood cells, hence reducing iron slows the production of red cells, though doesn't necessarily lower the Haemoglobin itself. That is where venesection comes in,

On your bloods your Ferritin (iron level) should be checked as a matter of course, my lab operates a normal scale of 15-300 being normal, and my Haemotologist tries to track mine around 5.

Your tolerance of this does vary person to person, since iron is an essential component of Haemogloblin operation that low iron will inevitably lower the efficiency of the oxygen transmission around the body. Hence the breathlessness, tiredness of muscles, aches etc..

If you have PV (i.e. produce an excess of all cells) then there are other treatments available to you if the iron deficiency is a problem.

Regards, Ian

[MistyBlue2]

Hi Marc,

I was having the same trouble as you, but before DX I thought I was just pitifully unfit!

Once diagnosed they brought down my HCT levels (I was 61!!!) and I've found that that has helped with the breathlessness no end. The difference has been remarkable.

I'm also borderline anaemic these days, and still get a little bit breathless if walking up inclines, but on the whole I'm way better.

Good luck!

[mark382 in reply to MistyBlue2]

Thanks for reply. I was very sluggish and tired all the time before DX and first venesection.. Still have bouts of tiredness. I also have difficulty sleeping on my back and now have 2 pillows which helps.

[linds]

Yes, me also and often over the slightest of effort. Another thing, I find it difficult to breath well on my back (when lying down) and turn to my side when it immediately becomes more comfortable. Thought this is possibly due to enlarged spleen and also why I get breathless.

The sweats are AWFUL I would love to find a solution for them.

Best wishes

[mark382 in reply to linds]

Thanks for reply. Sorry put response to sleeping on back on previous post.

[Geoff_mpnfamily in reply to linds]

Hi Linds, I find milk thistle helps but I think it mops up any meds you might be on. I'll have to check that out.

[linds]

I will also ask my chemist about the milk thistle - thank you it's so great how we all try to help each other. Take care.