Self Combustion : I was wondering if that is a side... - PMRGCAuk

PMRGCAuk

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Self Combustion

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I was wondering if that is a side effect from Prednisone.. Because sometimes I wonder if they will find me in a pile of ashes in my recliner. Gosh I hope not I love this chair. But some days it is either cry or combust..

Well today went back for the results of my sleep test.. Why can't I have sleep apnea rather than you have severe sleep apnea.. Did they factor in the fact I have a cat who comes n goes as she pleases..

She said I stop breathing every minute or so... truthfully I stopped listening.. How can I go from passing all the other pulmonary tests in the 90's n blowing their minds when they found out I smoked two packs a day for 30 years.. to you have severe etc etc..

my colonoscopy said I dodged the cancer bullet on my mothers side but I have severe diverticulitis.. Never had a problem there..

So now I wait to get the machine that will breath life back into me... maybe it will help who knows it would be fun to actually sleep for mire than 2 hrs 😴...

ok enough of a rant..

I know the huge weight gain is responsible so my question is once I lose the weight will I still have to use a cpap machine..????

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olive2709 profile image
olive2709

Love the name of machine ,!!!!!

JJackdaw profile image
JJackdaw

Hi Lin, I don't think you will need machine when you lose weight. I'm saying this because my son was very overweight and used one for quite a while. He also had type 2 diabities until he had bariatric surgery last year. He has now lost most of his weight but more importantly he doesn't need the breathing machine and the diabetes has gone. I don't know if you're quite overweight, as we've all piled on the pounds due to pred, but take heart, it will all come good when this pmr journey is over 🀞🏻

in reply to JJackdaw

Oh yeah I piled on an additional 60 Lbs when on methotrexate. Once off of it I have been able to handle the cravings for food. With the meth I thought I truly was dying so I really didn't care.

I went from size 20 to size 26 so fast that I never bought or needed the in between sizes. The picture of me here is 270 lbs well now 264.3.

It is such a weird thing when people tell me I am not fat. I laugh and say " just goes to show you my skinny personality is hard at work.

My arms are not too big and neither are my legs and ankles all my weight is in my abdomen and butt.

PMRpro profile image
PMRproAmbassador

Possibly - it depends on the cause of the sleep apnoea. A lot of fat around the neck is probably the most common cause - the tongue and throat muscles are more relaxed and sort of collapse and stops the flow of air. But there is also central sleep apnoea which is a brain control problem. And you can have both.

mayoclinic.org/diseases-con...

Since you stopped listening - do you have any idea which they think it is?

And the breathing tests looking at your lungs are a different matter - it isn't your lungs.

in reply to PMRpro

Hi PMR pro

I have the report and it says my composite apne/hypopnea index AHI was 66.4 per hour. 358 apnea events and 330 hypopnea events for the duration of the study of 627.8 minutes.

Impression : Obstructive Sleep apnea, severe.

Recommendations: Treatment is advised. Given the severity, a trial of CPAP/BiPAP is advised.

I will look up what hypopnea is....

PMRpro profile image
PMRproAmbassador in reply to

"overly shallow breathing or an abnormally low respiratory rate" - slower breathing rate and a drop in the oxygen level in the blood.

Yes - I'd be taking the machine with delight if I were you!

in reply to PMRpro

I will... Thanks for the info.....

Marie1479 profile image
Marie1479

Hi Lin,

Because my normal cholesterol went up over 60pts and sugar 20pts due to steroids, I have adopted a low carb diet. I allow very little carbs in am with protein and rest of day no carbs (no bread, rice, sugar, pasta). IT WAS NOT EASY, but I got use to it and because it is was my health it's was easier not to give in. Not only have I been able to keep weight off, I actually lost weight and I'm still stuck at 15mg. My husband did as well and although he wasn't heavy, he did have Apnea. He lost 20lbs (because I am cooking differently ) and his apnea is gone! Change how you are eating, it will help.

in reply to Marie1479

Yes Marie I agree. I have stopped most of the carbs and have lost 4 lbs this month so far even according to dr scale.

I'm have taken on a new attitude regarding portion size. I say " will this taste any better if I have more? Nope!! so I convince myself that a small portion of my chocolate bar is enough.

I even had a pie that took 3 1/2 weeks to finish. I take the tiny slice make my decaf coffee go out on my porch and pretend I am at some ritzy hotel and am totally fine with 3 small bites.

Ok I am rational and realize I am playing games with my own head but it works and makes it a whole lot more fun. And looking out at our pool makes it even more fancy hotel feeling.

The one thing I have not given up is my apple banana and orange. I am told they have too much sugar but I haven't figured out what to substitute for my snacks yet.

If I can't have carbs or fruit I really don't know what else to eat. I eat meats and cheese and will start making beans in my crockpot.

Truly I don't care what I eat I need to know what to eat.

Thanks for advice

Marie1479 profile image
Marie1479 in reply to

I Allow myself 1/2 English muffin & soft boiled egg in am (my guilty pleasure) It's my favorite thing and look forward to it. The only fruit I eat is mixed berries (strawberries, bluberries, blackberries and raspberries) and only in late morning. Never at night.

in reply to Marie1479

In the am I can't stand the idea of eating and I know I should.. So I have my oatmeal 1/4 cup dry so it is a small portion.. I used less than 1 tsp brn sugar 1 dollop of butter yum and just enough milk to wet it.. after I cook it in water of course πŸ’¦

2 days I have 2 scrambled eggs with spinach n on occasion some cheese.. otherwise it is oatmeal... I used to have toast with it but those days are gone.

boo hoo !!

I shall opt to buy berry fruit.. but will eat the fruit I have now then transition.

PMRpro profile image
PMRproAmbassador in reply to

"... I know I should" - there have been recent studies that show that eating when it suits you is the best approach and that having breakfast makes no difference at all to the people who can't face breakfast! I also believed all the guff about "you must eat breakfast" and all it did was add calories I could manage without. Now I eat lunch at about 1.30 (OH won't eat earlier) and dinner at 7.45. Breakfast is 3 large mugs of tea before getting out of bed with a small amount of milk because that is how I like it. Rarely hungry - and if I want a snack it's nuts or a carrot.

in reply to PMRpro

I like your meal times.... I am always hungry hey at 8 pm so I typically have dinner then.

PMRpro profile image
PMRproAmbassador in reply to

I have to eat within 3 hours of taking the form of pred I use at 10pm. Then the gap to lunchtime the next day or the timing of lunch and dinner actually fit with the recommendations for intermittent fasting. Works for me.

Cinka profile image
Cinka in reply to PMRpro

So having breakfast prior to taking pred doesn't help reduce aftermath effects.. feeling spaced, dizzy, you name it?!

PMRpro profile image
PMRproAmbassador in reply to Cinka

Depends on the person - everyone is different.

Emilytom52 profile image
Emilytom52

πŸ’πŸ’πŸŒΉ

Woodiesmum profile image
Woodiesmum

I was the same x they offered me a machine and I said no thanks x it's not servere but I am fat now with the steroids and sometimes I feel like I am going to choke with my fat neck x but I have been today to see my rheumy and he wants me to reduce them and get off them as I have been on since oct last year and only down to 35 mg now x so I thought oh he will stop them asp but shocked as it's a 18 month program and he thinks when they are finished that I should be ok lol I wish I believed that x but I do take leflumide too and he thinks they will help take over from steriods but been on them only for a month so no affect at all yet x what a flopping mess we are in.

in reply to Woodiesmum

I have been doing some study on this and it looks like a good thing to use. If I could get a good night sleep of at least 6 hrs I would be a very happy camper.

You should look into it again woodiesmom .. I think it will be a good thing until we get this weight off.

Janll profile image
Janll

My husband has one of those machines and it keeps the cat away from him at night. When he moves to get up in the morning the cat gets closer. A good nights sleep is so beneficial. Have you heard about the good properties of coconut oil? It beats fat, really! All the best Lin in California. My home too until 43 years ago.

Jan 😎

I have heard about coconut oil n use it occasionally.

Recipes - break up cauliflower and coat it in coconut oil bake 40 minutes n yummy.

So much information hurts my brain.

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