1. < Blood Cancers & Disorders

Polycythaemia Ruba Vera, Jak2 mutation & link to Sleep Apnea

Posted by mags17 @mags17, Aug 25, 2023

I was diagnosed with Polycythaemia Ruba Vera with a jak2 mutation almost 2 years ago via blood test of course. I saw a post here some months ago that there could be a link between PV & Sleep Apnea. I have all the symptoms of sleep Apnea although never checked out for it. My snoring, mouth open, dry mouth with what felt like back of my tongue was glued to roof of my mouth, it was waking me up at night. Mentioned this to Haematologist assistant who wasn't very helpful, just insisted blood diagnosis was confirmed re PV. I explained to her that I was totally aware of this but felt my breathing may be interfering with intake of oxygen thus altering my routine blood test results.
Just that I damaged a muscle in my side last March, had to sleep in propped up position due to it. Noticed my breathing was much better, didn't have this dreadful dry throat or mouth any morning while in that position. Bottom line is, painkillers for bruised muscle played havoc with my stomach, so much so I couldn't take the Hydroxy or any other med. For 2 months my blood readings were within the normal range. I was taken off treatment for PV review in 4 weeks from then, again bloods were fine after another 4 weeks. After the following 4 weeks my platelets were elevated so prescribed Hydroxy again × 3 days weekly. The last couple of visits to clinic showed platelets readings coming back down but still outside the normal range. Perhaps it was purely coincidental that blood readings were fine without any Hydroxy when my breathing had improved. Any views on link with poor breathing during sleep? Apologies for lengthy post but in trying to clarify link between PV & Sleep Apnea, I had to explain how I had got clear tests during the time my breathing at night improved whilst sleeping in propped up position!

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

milkweed | @milkweed | Aug 26, 2023

This is very interesting, I have not heard of or read studies regarding a possible link. Find a sleep lab and be evaluated, you sound like you could possibly benefit from a CPAP machine whether it’s related to PV or not.

REPLY
1 reply
jjdownes01 | @jjdownes01 | Aug 26, 2023
In reply to @milkweed "This is very interesting, I have not heard of or read studies regarding a possible link...." + (show)
@milkweed

This is very interesting, I have not heard of or read studies regarding a possible link. Find a sleep lab and be evaluated, you sound like you could possibly benefit from a CPAP machine whether it’s related to PV or not.

Jump to this post

Amen to sleep study and CPAP machine. I have diagnosed pv for three years and sleep much better with mask and machine. No md says it’s related, but don’t deny it.
I also developed gout and take meds for it. Age 79. JJD

REPLY
Mentor
Lori, Volunteer Mentor | @loribmt | Aug 26, 2023

Good morning, @mags17 Polycythemia Vera is a blood condition where too many red blood cells are produced in the body. It’s generally caused by the acquired mutation in the JAK2 gene which can cause other blood conditions as well such as too many platelets. But there can also a link between sleep apnea and an elevated amount of red blood cells/hematocrit. When my RBC numbers started to climb for no reason, my doctor had asked if I have sleep apnea and ordered a test find out of that was the cause.

Here’s a great article on issues which can develop with sleep apnea
https://sleepation.com/the-relationship-between-sleep-apnea-and-high-red-blood-cell-count/
~From the Mayo website: Possible reasons for High RBC https://www.mayoclinic.org/symptoms/high-red-blood-cell-count/basics/causes/sym-20050858

You had an interesting discovery between your PV blood numbers and the change that came about in your sleeping pattern where you had better nights when you were elevated a little. I’m sorry you didn’t get a better answer than what the doctor’s assistant gave you. Yes, you have the gene but that may not be the entire story!

What you could do is ask your hematologist or GP for an overnight oximetry test. It’s simple and inexpensive, and should be paid for by insurance or medicare. It’s the same little gadget that is placed over your finger when you have a checkup. Only this one stays on overnight and has a link to a bracelet you where that records the numbers. My test last year was around $100. Also, since you had remarkably better blood numbers and better sleep, maybe continuing to elevate your upper body will help long term. It too a referral to the cardiac health unit at my hospital. Just had to stop in and pick up the kit, then return it the next day.

However, you were found to have the acquired JAK2 mutation which is common in the development of Polycythemia Vera. Your doctor is using this important factor to diagnosis your PV. But, it’s entirely possible to have both factors, the lack of oxygen from apnea and the JAK2 mutation playing into your diagnosis for PV.

From my understanding, blood conditions can take years to develop so even if someone has the JAK2 mutation, they may not see symptoms progress for some time. So in your case, even though you have the mutation which can cause PV, you may have developed the excess red cells, not because of the mutation yet, but because of the lack of oxygen at this time. It’s an interesting parallel you discovered between your change in sleep pattern while not taking the HU for a couple months.

The JAK2 mutation can bring about a change in bone marrow producing a condition referred to as myeloproliferative neoplasms where the bone marrow makes too many blood cells.
You might find this article helpful in understanding the JAK2 mutation.
https://www.verywellhealth.com/jak2-mutation-5217909
Even if your PV wasn’t caused by sleep apnea it certainly can create other issues as seen in the article I posted for you. It would be important to find out if you have it. Are you continuing to sleep elevated?

REPLY
1 reply
mags17 | @mags17 | Aug 26, 2023
In reply to @loribmt "Good morning, @mags17 Polycythemia Vera is a blood condition where too many red blood cells are..." + (show)
@loribmt

Good morning, @mags17 Polycythemia Vera is a blood condition where too many red blood cells are produced in the body. It’s generally caused by the acquired mutation in the JAK2 gene which can cause other blood conditions as well such as too many platelets. But there can also a link between sleep apnea and an elevated amount of red blood cells/hematocrit. When my RBC numbers started to climb for no reason, my doctor had asked if I have sleep apnea and ordered a test find out of that was the cause.

Here’s a great article on issues which can develop with sleep apnea
https://sleepation.com/the-relationship-between-sleep-apnea-and-high-red-blood-cell-count/
~From the Mayo website: Possible reasons for High RBC https://www.mayoclinic.org/symptoms/high-red-blood-cell-count/basics/causes/sym-20050858

You had an interesting discovery between your PV blood numbers and the change that came about in your sleeping pattern where you had better nights when you were elevated a little. I’m sorry you didn’t get a better answer than what the doctor’s assistant gave you. Yes, you have the gene but that may not be the entire story!

What you could do is ask your hematologist or GP for an overnight oximetry test. It’s simple and inexpensive, and should be paid for by insurance or medicare. It’s the same little gadget that is placed over your finger when you have a checkup. Only this one stays on overnight and has a link to a bracelet you where that records the numbers. My test last year was around $100. Also, since you had remarkably better blood numbers and better sleep, maybe continuing to elevate your upper body will help long term. It too a referral to the cardiac health unit at my hospital. Just had to stop in and pick up the kit, then return it the next day.

However, you were found to have the acquired JAK2 mutation which is common in the development of Polycythemia Vera. Your doctor is using this important factor to diagnosis your PV. But, it’s entirely possible to have both factors, the lack of oxygen from apnea and the JAK2 mutation playing into your diagnosis for PV.

From my understanding, blood conditions can take years to develop so even if someone has the JAK2 mutation, they may not see symptoms progress for some time. So in your case, even though you have the mutation which can cause PV, you may have developed the excess red cells, not because of the mutation yet, but because of the lack of oxygen at this time. It’s an interesting parallel you discovered between your change in sleep pattern while not taking the HU for a couple months.

The JAK2 mutation can bring about a change in bone marrow producing a condition referred to as myeloproliferative neoplasms where the bone marrow makes too many blood cells.
You might find this article helpful in understanding the JAK2 mutation.
https://www.verywellhealth.com/jak2-mutation-5217909
Even if your PV wasn’t caused by sleep apnea it certainly can create other issues as seen in the article I posted for you. It would be important to find out if you have it. Are you continuing to sleep elevated?

Jump to this post

Yes, I have continued to sleep elevated since the 8th of March this year, time I acquired the bruised muscle in my side. Main reason for continuing is, I wanted to see how blood results panned out by doing so.
I did check out Sleep Apnea to find that people with this condition were recommended to have head & shoulders elevated slightly, together with legs elevated during sleep. I can achieve this position by placing a firm pillow further down in the bed! However, I won't dwell too much on this, unless I am tested & diagnosed with Sleep Apnea first of all. Even to be free from a superglued throat upon wakening is a huge bonus in itself!

REPLY
1 reply
mags17 | @mags17 | Mar 19 11:33am
In reply to @mags17 "Yes, I have continued to sleep elevated since the 8th of March this year, time I..." + (show)
@mags17

Yes, I have continued to sleep elevated since the 8th of March this year, time I acquired the bruised muscle in my side. Main reason for continuing is, I wanted to see how blood results panned out by doing so.
I did check out Sleep Apnea to find that people with this condition were recommended to have head & shoulders elevated slightly, together with legs elevated during sleep. I can achieve this position by placing a firm pillow further down in the bed! However, I won't dwell too much on this, unless I am tested & diagnosed with Sleep Apnea first of all. Even to be free from a superglued throat upon wakening is a huge bonus in itself!

Jump to this post

I went to my GP with other issues & checked with him re Sleep Apnea. He went online & printed off a brief questionnaire form which listed sleep Apnea symptoms! I was in a position to tell him that I already had printed off the same form myself at home, had answered NO to all questions! so in other words, according to that, I don't have sleep Apnea!! I made the appointment with him in order to request a monitor to check this out!!
If the questions on this form were sufficient to diagnose YES or NO then why on earth would a monitor be suggested at all!! to detect the condition. I would be inclined to go take the monitor readings as valid & not a brief questionnaire form! Bottom line is, I had to leave out from his surgery still scratching my head as it were! No, I don't wish to be a victim of Sleep Apnea on top of all the other questions I need answers to, ie where can I ask a question on this Forum re having to take Warfarin Teva in conjunction with Hydrea for Polycythaemia Vera with a Jak2 mutation.
I had a leg clot initially, reason for warfarin prescription. Taken off warfarin after 6 months. 3 months later developed lung clot, blood test for PV followed at that stage which presented positive Polycythaemia Vera.
I asked my GP, Warfarin Clinic nurse & my Haemotologist if it was necessary to continue with warfarin treatment when it would seem that my PV diagnosis was the casual factor, it would seem, for the blood clots initially. None of the 3 could give me a definite answer! All 3 hesitated when asked the question! Am having nasty side effects ie itchy body rash at the moment so am not a happy camper when I can't get direct answers from them.
Apologies if this text shouldn't be incorporated with the Sleep Apnea discussion.
Mags 17

REPLY
Please sign in or register to post a reply.