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I have secondary polycythemia. Secondary to sleep apnea. Clinically diagnosed; not a figment of my imagination. Thought I’d beat it, but it’s back, probably due to the NoClean messing with my AHI. Just got bloodwork results today to confirm it.

Any tips on pressure management to rapidly reverse secondary polycythemia? The sleep doc was useless in the first place as to treating it. He put me in a convenient category and didn’t address my unique needs. I see him once a year simply to have access to APAP supplies.

Again, any tips on pressure management to rapidly reverse secondary polycythemia?

sila wrote: ↑

Tue Jun 11, 2019 5:44 pm

Again, any tips on pressure management to rapidly reverse secondary polycythemia?

As far as I know, there's no connection, and nothing you can do with pressure on cpap to change that.

I think that in my case it’s the number of hypopneas that are driving oxygen desaturation. It’s possible that increasing pressure to stop hypopneas may indirectly lower hemoglobin and hematocrit.

I was previously able to bring my red blood cell parameters down to normal even with the sleep doc’s low starting pressure of 5. Polycythemia was gone. Then I used the NoClean... I’m hoping that using my APAP without NoClean, using 2” mouth tape rather than 1” tape, and upping starting pressure to 10 will do the trick for me.

I had never heard of your condition and learned a lot here:

https://www.medicinenet.com/polycythemi ... _and_facts

O2 desats appear to be the culprit, and it appears that apnea can certainly be a contributing factor. So I would strongly recommend that you talk with your primary care physician or your hematologist to get their help monitoring and controlling the desats.

Monitoring might mean getting some special equipment from them to use for a while.

Maybe controlling them means adjusting PAP levels, but who knows, it might mean getting some supplementary nighttime O2 for a while.

Bottom line: you deserve medical help with this, and your sleep doc won’t help. So I hope you will reach out to your regular doc and/or blood doc. Good luck!

Thanks, Miss Emerita. I’ve had extensive medical testing for both genetic and secondary polycythemia by my primary care doc and hematologist. They don’t offer the sort of monitoring that you propose. They do agree, however, that this complex condition is in my case the result of sleep apnea.

Could one of these two docs refer you to a pulmonologist? It just isn’t right that nobody’s giving this medical attention.

In the mean time, are you able to buy an oximeter yourself to see how your oxygen levels are doing? If yes, maybe some of the forum members could make recommendations about what would work best for you.

Miss Emerita, I appreciate your kindness and thoughtfulness. My question remains the appropriate raising of APAP pressure.

sila wrote: ↑

Tue Jun 11, 2019 5:44 pm

I have secondary polycythemia. Secondary to sleep apnea. Clinically diagnosed; not a figment of my imagination. Thought I’d beat it, but it’s back, probably due to the NoClean messing with my AHI. Just got bloodwork results today to confirm it.

Any tips on pressure management to rapidly reverse secondary polycythemia? The sleep doc was useless in the first place as to treating it. He put me in a convenient category and didn’t address my unique needs. I see him once a year simply to have access to APAP supplies.

Again, any tips on pressure management to rapidly reverse secondary polycythemia?

I have Secondary Poly, too. The Apnea is not the cause for me but It doesn’t help things at all. I keep my Poly in check (somewhat) with a baby aspirin daily, drinking plenty of water, and phlebotomy if needed. And of course, using my cpap.

Barbee, sorry you’re dealing with it too. I’ve done the baby aspirin and phlebotomy too; am back to doing it now. Has your cpap ever made your numbers normal? That’s what happened to me until my AHI rose again in response to who knows what.

Got it, Sila! It’ll be good to see data again when your min is at 10 so the experts can advise you further on getting your AHI down. Hope you sleep better tonight.

Thanks for your understanding, Miss Emerita. You’re a gem!

sila wrote: ↑

Tue Jun 11, 2019 9:21 pm

Barbee, sorry you’re dealing with it too. I’ve done the baby aspirin and phlebotomy too; am back to doing it now. Has your cpap ever made your numbers normal? That’s what happened to me until my AHI rose again in response to who knows what.

I was diagnosed within weeks with both. About 18 months ago. My numbers have come down quite a bit with many at normal range now. My hct was down to 48 last week. A huge improvement for me. So I cant say the machine is causing it, but I have a lot more energy now and thats always welcome. The hemo Dr is pleased with my progress.

Edit to add:
My sleep Dr, my pulmonologist, and Hematologist are all working together on my issues.

zonker wrote: ↑

Mon Jun 10, 2019 2:16 pm

sila wrote: ↑

Mon Jun 10, 2019 11:48 am

Fucking hell about SoClean! Thanks for the heads up, palerider!

um, language.

I know, I wish the forum would put a filter on SoClean, so we wouldn't have to see it.

zonker wrote: ↑

Mon Jun 10, 2019 2:16 pm

sila wrote: ↑

Mon Jun 10, 2019 11:48 am

Fucking hell about SoClean! Thanks for the heads up, palerider!

um, language.

Dogslobber is right, we should watch our language and say SoC***n or something similar.

I’d like to toss my SoC***n off a ***** into a pile of ***** ******* ***** ** exploding piranhas.