Unexplained secondary PV: Hi, I was diagnosed with... - MPN Voice

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Unexplained secondary PV

Mckenzie07 profile image
17 Replies

Hi,

I was diagnosed with secondary polycythemia 16 years ago. I am a smoker but smoke at the most a pack a day years ago. I am quitting... My question is, could my 1/2 a pack a day smoking habit cause Secondary PV? The mayo clinic finally diagnosed me as having stress PV after every test ran they could think of came back normal. I am a 40 year old female. Any thoughts or ideas would be greatly appreciated. I have been suffering from extreme fatigue for quite some time. I need my life back for my kids, husband and me!!!

Thanks

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Mckenzie07 profile image
Mckenzie07
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17 Replies
revfee profile image
revfee

My understanding us that secondary PV isn't a disease at all but the body's attempt to cope, so for smokers who are not getting enough oxygen the bone marrow produces more red cells so as to carry more oxygen... same happens at altitude... I imagine that like everything else our bodies vary in our ability to cope with low oxygen, and the strategies it uses to deal with the situation. Sounds like the cigarettes need to go... though I know it isn't easy. Good luck, Fee

Paul42 profile image
Paul42

It does sound like the cigarettes may be a contributing factor to your illness. I know any habit is hard to kick but if you can you should hopefully find your condition improves vastly.

Good Luck

Paul

Twinkly profile image
Twinkly

Let me tell you my view ,,if you want to live a long life ,start the journey today ! Eat healthy fresh food ,drink lots of filtered water and good juices ,to clean your blood and organs ,,does that make sense to you ,,

You are a special person ,one of a kind ,very loved and needed ,,take care of you.. This problem does not go away ! But you can do lots to help yourself cope with it ,,if your body gets its needs it works better ..the fatigue is bare able ,,save your strength for the important tasks ,,rest and recouperate when you can ,, that's the way I cope ! Twinkly 💜

Kerri2 profile image
Kerri2

My understanding is secondary pv and secondary thrombocytosis are result of an underlying condition. Resolve the condition and the pv/et should resolve. Both of my parents died as a result of COPD in the last 3 yrs, my Dad in April of this year. I myself smoked for 30 yrs, if I hadn't already quit this experience would have done the trick.

Please stop!

JediReject profile image
JediReject

Hi Mckenzie07. .I had to look this up as was unaware of it, but says it can be linked to an underlying condition such as COPD and Narrowing of Arteries esp to kidneys. As for the smoking causing your secondary PV I can't say but far from wishing to lecture I can't for one second think your smoking will help your situation and though you can't turn the clock back in all honesty it would have helped if you binned them many years ago. Then again I know it isn't easy as I loved my beer and used to say 'I'll cut down' , I'll have a break, I'll stop drinking etc, but the Beer Monster inside me won the day. .

I haven't had a pint since last August so it can be done. Do your best. In any event it should help ease your fatigue. . Good Luck to you. Chris

Mckenzie07 profile image
Mckenzie07 in reply to JediReject

Thank you. I know what you mean. I get stressed and I want a cigarette or even a drink. They both go hand and hand. I'm determined this time. Somethings got to give!

johoho profile image
johoho in reply to Mckenzie07

Hi Mckenzie, giving up the ciggies is soooooooo hard but so worth it! Like jedi, I don't want to lecture or preach, you have your own choices to make. But the great thing is, its just possible that the choice you make could make a huge difference to your life. Many of the people on this forum would give much to have that choice. Have you tried Alan Carr for giving up smoking? my husband tried giving up for 10 years and failed every day. Having tried everything he attended an Alan Carr seminar and 2 years later still hasn't picked up a cig & I believe he never will again. He is now an annoying reformed smoker!

johoho profile image
johoho in reply to johoho

also wanted to say, good luck!

Mckenzie07 profile image
Mckenzie07 in reply to johoho

Thank you so much!

Mckenzie07 profile image
Mckenzie07 in reply to johoho

That's awesome! I'll look into it! Thank you😊

johoho profile image
johoho in reply to Mckenzie07

Brilliant, they have a ridiculously high success rate!

jojam profile image
jojam

Yes the smoking will not help your condition either primary PV or secondary polycythaemia which ever you have. Best thing to do is stop.........not easy I know I've been there! I have secondary polycythaemia caused by my COPD which in turn was caused by smoking among other pollutants' I no longer smoke but still have chronic health problems. Please stop smoking it may not be too late for you to halt the damage & improve your condition.

Best wishes

Jo :-)

Mckenzie07 profile image
Mckenzie07 in reply to jojam

Thank you

Mckenzie07 profile image
Mckenzie07

Thank you all for the encouragement! It means a lot. I'm dealing with extreme fatigue and we just adopted a 7 month old a few months ago. I'm going to HAVE to quit. I've done it before and can do it again. I just wish I could find the exact cause and get my iron levels back up and see if that would help.

Mazcd profile image
MazcdPartnerMPNVoice

hello McKenzie, I have checked with Prof Harrison at Guy's Hospital for you and she has said that, yes, smoking could cause secondary PV. You seem very determined to quit smoking and I wish you luck. The fatigue is very debilitating, you should ask at the Mayo clinic for advice on how to deal with this, Prof Mesa of the Mayo Clinic is a great advocate for exercise helping with fatigue, I know that when you are tired the last thing you want to do is go out for a walk, a cycle ride or do some other type of exercise, but it can help, you don't have to push yourself, even a gentle stroll can help. And make sure that you stay well hydrated as this can also help. I do hope you succeed in quitting smoking. Let us all know how you are getting on, and remember, we are here to support you. Best wishes, Maz

Mckenzie07 profile image
Mckenzie07 in reply to Mazcd

Thank you!

eddiedailey5580 profile image
eddiedailey5580

I was diagnosed with secondary polycythemia about a week ago. Also have low iron levels. Have severe lack of energy blurred vision restless legs problems with sleep. I'm seeing a hepatologist. He wants to find the underlying cause.Do not smoke.Do use smokeless tobacco.54 year old male.Want my life back.

Thanks

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