Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Blood diseases an apnea anyone?

Hi Everyone,

My wife and I are curious to know if anyone who has AS on this forum also has any blood disorders or sleep apnea. I have both and have recently found two others who do too. Seeing as AS is fairly rare and have come across a few others I am curious as to whether any others out there have these problems too. Please let me know. Thanks,


Bob

Beauty is in the eye of the beholder. Behold the beauty of Orca Art

I have sleep apnea. In fact it has beenone of my post surgical complications. It is at its worst if I sleep on my back and for some odd structural reason dissipate if I sleep on my right side which I cnnot do because of the surgery.

The bending of my spine due to AS plus an elongated uvula seem to bee the cause also I broke my nose as a teen in feeble efforts at football playing leaving me with a deviated septum. The trio seems to give me horrid snoring that stops my breathing and if I'm sleeping mandatorily on my back I awake after a couple of hours with a headache that is in all liklihood oxygen deprivation.

The joys of AS. Oh how I need to rollover ont my side and get a good ight's sleep of a solid 4-5 hours.

 
stevec-they also serve who stand and wait

Hi Steve, Have you had a sleep study done? I just had one the night before last and my oxygen levels were down to 87%. They placed me on a CPAP machine which blows room air into my nose while sleeping and I got THE BEST 4 hours sleep in years from using the machine. I will getting one for home in the next week or so and I can not wait!!!!!! If you havent had a study done, it is well worth it!!!!!!

Thanks for your reply!

Bob

Beauty is in the eye of the beholder. Behold the beauty of Orca Art

Strange, a great deal of what Steve listed also applies to me. I also broke my nose as a kid and I have the same sleep problems. Every once in a while, Dorrit has to wake me up because my breathing gets pretty irregular and makes her think I have an obstruction in my air passages. And I snore whenever I lie on my back so Dorrit pounds me in the side to roll over which stops the snoring.

On the blood side, I have chronic anemia. I have had to take iron supplements ever since I was about 3 years old. I can't absorb iron unless I also have B-12 shots on a monthly basis. The shots are because I don't absorb B-12 naturally but I need it to absorb the iron. (hope that makes sense).

I don't think that the above would come under blood diseases but it is still a problem. If I don't take the iron and the B-12, I would get pretty run-down in a few short weeks.

George

Breb Assyl

Thanks George! I have what is called Polycythemia which is a form of myleoproliferative disease where I make too many red blood cells. My body tells me I am not getting enough oxygen so the marrow jumps in high gear making more blood cells to carry more oxygen. Primary polycythemia turns to leukemia in a short time frame and this is why I am wondering if other AS'ers have any type of blood related diseases too. Trying to find a common denominator if there is one.
Hopefully the CPAP machine will bring the O2 levels up enough at night that the blood will level off and marrow will not have to make so many cells. If not, its back to the drawing board and more tests.

Thanks again,
Bob

Beauty is in the eye of the beholder. Behold the beauty of Orca Art

hey george, now I am curious about this anemia you got, does it act like one minute you are full of energy and the next you almost go to sleep standing up and feel exhausted most of the time. my latest blood test showed some form of anemia but doc didn't get into all that much....could you tell me more about these symptoms.....oak

I am older then I look and I feel older than I am

if apnea is like snoring than I aint got it...what I got is my breathing is so shallow that my wife or my in-laws during hunting season wake me up every few hours just to make sure I am still alive.....but since my whole family can sleep during an earthquake I aint to sure about the snoring thing.......oak

I am older then I look and I feel older than I am

Hey Oak,

You can have apnea without snoring. It is an obstruction of the airway or the body stops breathing, for some people over 60 times an hour!

Obstructive sleep apnea
Obstructive sleep apnea is characterized by repetitive pauses in breathing during sleep due to the obstruction and/or collapse of the upper airway (throat), usually accompanied by a reduction in blood oxygen saturation, and followed by an awakening to breathe. This is called an apnea event. Respiratory effort continues during the episodes of apnoea. An analogy might be helpful: OSA is like putting your hand over your vacuum cleaner intake nozzle. Your hand blocks all air from getting through (upper airway collapse) even though the vacuum cleaner is still applying suction (respiratory effort continues). The vacuum cleaner is usually straining somewhat at this time, and so does the human body.


Central Sleep Apnea
Central Sleep Apnea is defined as a neurological condition causing cessation of all respiratory effort during sleep, usually with decreases in blood oxygen saturation. To return to the vacuum cleaner analogy: central sleep apnoea would be like pulling the plug on the vacuum cleaner. No power, no suction: if the brainstem center controlling breathing shuts down there's no respiratory effort and no breathing. The person is aroused from sleep by an automatic breathing reflex, so may end up getting very little sleep at all.

Note that CSA, which is a neurogical disorder, is very different in cause than OSA, which is a physical blockage - though the effects are highly similar


Hope it helps!

Bob

Beauty is in the eye of the beholder. Behold the beauty of Orca Art

Hi Oak,

No, my anemia cycle doesn't change as quickly as you posed in your question. Mine is more like a 6 week cycle and follows the same time interval as when I get my B-12 shots.

A couple of days after the B-12 shot (Dorrit refers to them as my superman shot), I start to feel like I have more energy again and this lasts for 3 to 4 weeks. Then I start to notice a slow decline in energy and general well-being over the next 2 weeks and so, back to the Doctor. I really should arrange with the Doc to get the shots every 4 weeks now but originally, every 6 weeks was just right.

I should have been clearer about what kind of anemai I have. It is called pernicious anemia. Some Doctors refer to it as Addisons's anemia. It is a specific type of anemia associated with the lack of acid in the stomach, inflammation of the tip of the tongue and nervous disorders, but not necessarily all three problems. My anemia has worsened since I had a series of stomach surgeries from 1964 to 1973. During the last stomach surgery, they did a vagotomy which is severing the vagus nerve to the stomach. That shut down the ability of my stomach to secrete acid as the start of the digestion process. Poor digestion, less assimilation and down goes the body weight.

Pernicious anemia responds well to treatment with liver and stomach extracts, Folic acid and B-12. I only take to Folic acid and the B-12. It may be worth a try if you can get the Doctor to test your blood, then get a B-12 shot and then another blood test several days later after the B-12 has had a chance to work. In the meantime, start taking folic acid and iron once a day. One tablet of each a day is fine, too much is no good.

Hope your Doctor is more help when you see him/her next.

George



Breb Assyl

Hi Bob,
It seems that AS and hereditary spherocytosis (HS) run in my family - and it seems that the same people get both the lovely diseases .
HS causes spherical shaped red blood cells which are then destroyed by the spleen. If there happens to be a time (usually stress induced) when lots of the funny shaped red blood cells are produced, it can lead to anemia. However, taking iron supplements doesn't really help too much, as there are not enough red blood cells to carry the iron. My Dr had always prescribed daily folic acid just to aid with the new production of cells, which of course, messes up my whole MTX routine.

Happy Holidays!
Megan