Sleep Apnea

[phebamom]

Does any one have issues with sleep apnea with this illness? PMR 20 years, GCA at least 10. Pred 12 years, Actemra 2 years. My blood pressure goes up when I sleep. I am scheduled to be tested for sleep apnea. I am wondering if this is why I can't get any remission or control of this illness?

[PMRpro Ambassador]

Some of us just can't - I've had PMR symptoms for 18 years, pred for nearly 13. But sleep apnoea could well be contributing. There are a few people on the forum who are diagnosed with it and use CPAP

[jls93 in reply to PMRpro]

I use a CPAP for >12 yrs....that being said, fatigue with adrenal insufficiency, anemia (post op) all are different to me.

[crafty_grannie]

I have used a CPAP machine for eight years plus. If ever I don't use it for a day or two, waiting for replacement part etc, my husband says I toss and turn all night and often call out in my sleep and I feel unsettled when I wake. Poorer sleep would adversely affect PMR/GCA I imagine. I occasionally get fed up having to wear the mask, but after my heart specialist made a strong point about always using it, I'm just glad the sleep apnea is being addressed. PMR/GCA for seven years, 60mg now down to 5mg following the DSNS method with only a few hiccups. Hope you get it sorted out.

[SusanEleven]

I was diagnosed with severe sleep apnea about three years into my PMR journey. I fell asleep in the middle of conversations, during every TV show, and even reading messages on my phone. My blood pressure was very high and resistant to several medications. I’d been tested in the past and didn’t have sleep apnea — back them I was just a loud snorer (still am) with lousy sinuses and allergies.

While I don’t feel any more energetic after three years of using a CPAP machine (I feel like my fatigue will always be with me) I no longer randomly fall asleep, My blood pressure now responds to the same meds it once resisted and is under control. I feel I’ve done something good for my overall health.

I think in my case weight gain over the years plus the extra fluff/redistribution of fat from prednisone is a factor. Which is not the case with my daughter and my neighbor, both of whom have no excess weight but have sleep apnea. Both were told they just have small/narrow airways as the cause.

As I tapered down the steroids I managed to lose 20 pounds. I have lost another 29 pounds in the last year. I asked for a sleep apnea retest. I still have it but now it’s moderate and not severe. Progress.

Funny moment. After the last round of weight loss my rheumatologist said: “Have you lost weight? Your head looks so much smaller!”

Funny phrasing but so true. I realized the steroid moon face was finally gone.

[phebamom in reply to SusanEleven]

Congratulations on the weight loss. I know it is very hard to do. I was doing well with my weight, currently on 5mg. Have to stay on 5mg. I went on BuSpar for anxiety a year ago, and have gained back 10# I previously lost. I am not very much overweight, 5,9", 160#. Most of my weight is in my abdomen, which I know is the worst place. I no longer have moon face, but no longer recognize the face in the mirror. When I lie down at night it feels like I am actually choking on something. I cough out a scabby looking thing that is called a mucus plug by doctors. I just call it gross, and suspect the choking feeling is connected to my high BP and sleep issues. If I take a pill during the day I am fine. If I try to take a pill after lying down it gets stuck with whatever is stuck in my throat and I can't swallow it. I also suspect a Cpap machine will not be the answer for me. Something in my throat just feels off, and i always wake up with a taste in my mouth that feels like infection

[SusanEleven in reply to phebamom]

Are you aware of any sinus or allergy issues? I would wake up choking from post nasal drip until I was put on a regimen of Neti pot rinses 2x/day plus an antihistamine and mucus thinner (GUAIFENESIN) by an ear/nose/throat doctor. I think it’s good you’re getting the sleep test. If you don’t have apnea that’s something to cross off the list of possible problems.

[phebamom in reply to SusanEleven]

Sinus issues would not surprise me. Some mornings I blow blood out of my nose. I live in a state with a high mold count. We have two slick haired dogs. No cats. I am very allergic to cats. Our dogs are trained to stay on first floor from puppyhood. they do not come up where we are sleeping.

[phebamom in reply to phebamom]

We thought the Bp problem was anxiety, was put om BuSpar, and as needed Zanax. Problem not anxiety, although I am an anxious person. Thought it was hubby's snoring. He snores, then snorts, stops and starts again. He was tested for sleep apnea three weeks ago, waiting for results. Sleep apnea doctors are going to call me in the next few weeks for appt. Also, having veins in legs tested. Growing old sucks.

[Nagswoman]

Other half has had a CPAP for 3 years now. At checks, he always had high blood pressure with no apparent reason. We always went to the doctor together. On one occasion I told the doctor that the other half seemed to stop breathing and then started again with a big snort and I didn't know whether to shove him or not. Doctor said that it sounded like sleep apnoea and that causes high blood pressure because the adrenal gland chucks out some adrenalin on each occasion to start the breathing again. At the sleep clinic he got diagnosed with severe sleep apnoea, 32 occurrences per hour. Since using the CPAP machine, his skin colour is normal, not grey. He sleeps soundlessly now, until the CPAP moves and blows on me like a cool fan, waking me up. Lol.Is the adrenalin boost going to happen, making BP high, if preds have compromised the adrenal glands though?

[PMRpro Ambassador in reply to Nagswoman]

Pred does't compromise the adrenal function in general - rather, because there is plenty of corticosteroid present in the body, it switches off the need for the body's own corticosteroid, cortisol, which is essential for the body to function. The adrenal glands still produce the other substances they make.

[Nagswoman in reply to PMRpro]

My adrenals are not controlling my heart rate unless I take more than 6.5mg.

[PMRpro Ambassador in reply to Nagswoman]

I don;t get what you mean?

If you are taking more than 6.5mg pred, the likelihood is they aren't producing cortisol at all. Other things are produced as normal though - especially the substances produced in the adrenal medulla which isn't affected by ACTH which may be suppressed to some extent by pred.

It's a massively complicated feedback system and several factors are involved in the story. I don't pretend to understand it fully!

ncbi.nlm.nih.gov/pmc/articl...

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