Sleep apnea and PMR

[papadapadoo]

Over the last year my sleep has been poor, and finally I had an overnight sleep study, which revealed severe apnea. I'm pretty sure this is new to me and I did some reading. Apparently there is a nasty connection between apnea and PMR (and RA). One source:

"The co-existence of sleep apnoea in rheumatic disease patients may influence the severity of patient-reported symptoms of pain and fatigue, as well as potentially impacting on levels of circulating inflammatory markers and mediators [10, 11]. The presence of sleep apnoea as a comorbidity may interfere with the evaluation of rheumatic disease activity and responsiveness to therapy. "

So it appears that the apnea may amplify the inflammation in PMR. Anyway I was sent home with a BiPAP machine and will report later whether it has any effect on my PMR, which started in Dec. '22.

Has anyone had experience with apnea and PMR? I couldn't find a reference here.

[suzy1959]

I was diagnosed with moderate sleep apnoea about 18 months ago but the CPAP made my already very bad sleep even worse so I haven’t been able to use it!

I didn’t realise that there was a connection between PMR and sleep apnoea.

The good news for me is that after nearly 12 years my PMR has gone and I am finally able( I hope) to reduce the steroids. I am hoping that the reduction will help my insomnia 🤞🤞

[DorsetLady PMRGCAuk volunteer]

I think another connection may be that if Pred re-distributes the body fat around your neck, as it does for some - [me on higher doses] - it can then affect your breathing at night. It certainly affected my snoring [familial issue].

[Kendrew in reply to DorsetLady]

Ditto!

[SnazzyD]

Hello, did you have much weight gain? As DL says, Pred will cause what fat you do have to settle around the neck and face. Others here have mentioned breathing changes due to feeling obstructed. If you have put on extra pounds like many do on Pred, it’ll put extra around your neck.

[papadapadoo in reply to SnazzyD]

I have not gained weight; nor do I have moon face or belly fat (beyond what was there already!), thanks, I believe, to berberine, which I have taken since I was diagnosed. My neck size is the same.

[PMRpro Ambassador]

Are you sure the PMR is polymyalgia rheumatica and not progressive muscle relaxation which may be used in management of sleep apnoea?

pubmed.ncbi.nlm.nih.gov/219...

Or even palatal muscle resection?

mdpi.com/1648-9144/59/8/1432

And there is a link with fat deposition due to pred effects as DL and Snazzy have mentioned.

[papadapadoo in reply to PMRpro]

The article is not specifically about PMR, but about rheumatic disease in general, and in specific, RA. It's more interesting about apnea (US spelling) than PMR. academic.oup.com/rheumatolo...

[PMRpro Ambassador in reply to papadapadoo]

PMR isn't the same as RA though. The RA often leads to degeneration of the temporomandibular joints and this has a narrowing effect on the airway - resulting in sleep apnoea. There is a close link between RA and TMJ - in both directions. PMR does not result in joint degeneration - there is another reason for PMR patients experiencing sleep apnoea.

creakyjoints.org/living-wit...

[Quintius]

I was never diagnosed with apnoea but started snorring so much when i began taking prednisone that my wife and I had to sleep in separate rooms. But she could still hear me at night. However it has gotten much better now as I have come down to 7.5mg. I should mention that in the same period of time I dropped 12 kilo. So don't know whether it is the reduction of pred or the loss of weight that caused the betterment. Maybe a combination.

[Bella59]

Thanks for the interesting articles.I am waiting on equipment to try as i have been diagnosed with sleep apnoea.I am constantly falling asleep during the day.I have Rheumatoid Arthritis and PMR down to 3mgs pred.I was off pred in 2021 but it came back hopefully this time it will go for good.I also have hypothyroidism so was never sure if that contributed to tiredness as i sometimes feel under mecicated.According to gp i am not but that's another story.I am thankful for the information i have learned on this site also thyroid and Nras.

[PMRpro Ambassador in reply to Bella59]

Many people with thyroid AND other fatigue-associated conditions are known to do better when constantly managed as hypo and the good specialists do so. Trouble is, GPs are out of their depth with complex patients.

[Bella59 in reply to PMRpro]

I had my dosage dropped last December because tsh was low 0.04.My t4 was near top range no t3 being done now.He did actually listen to my concerns and then only dropped 12.5 mgs instead of 25mgs.I did say not happy,i know my own body.Gp's seem to just concentrate on TSH.He actually wrote to endocrinologist,needless to say he agreed with gp.To give gp his due he at least tried to help.I said i will wait a few months then get private tests done to include T3.Thanks for your reply.

[PMRpro Ambassador in reply to Bella59]

Strange things happen to TSH with autoimmune disorders and pred ...

My daughter has Hashimotos. She is on LDN and eats gluten-free now and there are no antibodies to be seen. Pain in the rear when she visits as she's been vegan for ages - one or other is not too bad, both together is an absolute nightmare for eating out ...

[MarkyMark60]

Im almost 80 and have had PMR for 4 years. Noticed that I was waking up with a dry mouth so probably snoring! Home sleep test revealed moderate sleep apea so medicare got me a CPAP worse machine ever for an old person. Continuous high pressure almost impossible to breathe out. Happy you got a BIPAP. I’m going to try a denture sleep apnea device.

Another thought! I was off pred for a year and started feeling bad again so work down from 5 to 1 mg and I feel good again. At 80 and feeling good on 1 mg whats the hurry to get off of low dose of steroid. Feel good till the end!

[Krawlins]

can I ask what a BIPAP machine is please. My husband has a CPAP and it’s ok when it’s on 4 but it ramps up to 11 and as soon as it does the air starts coming out the mask and wakes me, so much so I have to get up and switch it off and back on again, that gives me another 20 minutes and the next time I usually switch it off altogether, he breathes through his mouth so the nasal mask doesn’t help. It’s just as bad as his snoring used to be!

[PMRpro Ambassador in reply to Krawlins]

It is a bilevel positive pressure machine - as opposed to constant positive pressure. Explained here:

webmd.com/sleep-disorders/s...

"Both deliver air pressure when you breathe in and breathe out. But a BiPAP delivers higher air pressure when you breathe in. The CPAP, on the other hand, delivers the same amount of pressure at all times. ... So it is easier to breathe OUT with the BiPAP"

[Krawlins]

Ah yes, thank you for your quick response PMRpro, I do believe I’ve seen reference to this on a YouTube video (US). I wonder whether the NHS provide these. I think an email to the sleep clinic might help as my husband’s just seems to leak once it’s ramped up and consequently I’m switching it off as he’s completely oblivious. I know that’s not right that I’m doing so. I’ve been intending to ask for a while now if they can they turn it down as it goes from 4 to 11 and the difference is very obvious !

[PMRpro Ambassador in reply to Krawlins]

I didn't know they used CPAP for sleep apnoea, my husband's department usually handed out BIPAP. It depends on the cause of the sleep apnoea but it seems quite common for patients not to get on with CPAP and be switched.

drugwatch.com/philips-cpap/....

[Krawlins]

Interesting article, seems it does depend what type of sleep apnea you have, whether it be obstructive or central and whether have any other diseases too. At least it has prompted me to email the sleep clinic. Thank you for your assistance.

Kay