Laugh please....: Wouldn’t it be nice to be put in... - PMRGCAuk

PMRGCAuk
10,433 members18,965 posts

Laugh please....

davidcantswim
davidcantswim

Wouldn’t it be nice to be put in a coma for a few months and let the hospital reduce the steroids whilst you’re out of it? Wake up ah I feel good and off out for a jog.....

40 Replies
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By the way I’m down from 80mg to 12mg and struggling....

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to davidcantswim

As suggested by Scoopitup why not go up a few mg - absolutely no point in struggling!

I will see how the next few days go Ma’am

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to davidcantswim

If you’ve just dropped it might be steroid withdrawal, that usually lasts 2-3 days. Any longer than that, it’s not enough Pred - so don’t let it get out of hand, the sooner you catch it, the better.

Cyclo5
Cyclo5
in reply to DorsetLady

What's steroid withdrawal?

I've been reducing (again) pretty consistently. Was at 12,reducing 0.5mg steadily, went too quick from 10.5 - 10 - 9.5 as the classic symptoms of stiff and painful shoulders and hips and fatigue returned with a vengeance.... But may have been a little bit of withdrawal?

PMRpro
PMRproModerator
in reply to Cyclo5

Could well have been - steroid withdrawal discomfort happens quickly, the day after you reduce the dose quite often, and then improves over the following days.

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Cyclo5

As PMRpro says your symptoms could be SW - that sometimes happens when your body realises it’s not getting the same dose today as it did yesterday. Very often those symptoms replicate original symptoms - but not always - and usually only last 2-3 days - or until body gets used to new lower dose.

I didn’t get original pains, but just felt off colour, irritable and generally yucky! So we’re all different.

If the symptoms continue longer than 5-6 days then you probably have to consider it might be a flare.

David as an insomniac I am with you re sleeping treatment just generally. 🤪 If you are struggling can you go up to the last place you felt better and stay for a while? Let's face it anything under 15mg after 80mg is a gain.

Yes it would!

Out for a jog sounds good to me davidcantswim

PMRpro
PMRproModerator

Providing you could suspend the rules of physiology - use it or lose it when it comes to muscles!!! A physiotherapist friend had a subarachnoid bleed and was in a coma for about 10 days - she had to learn to walk and even sit up when she recovered because of the massive muscle loss.

But a week asleep sounds good to me at the moment too!

And BTW - back to 15mg sir, this isn't a race ...

Constance13
Constance13
in reply to PMRpro

Wow! I didn't realise you lost muscle strength that quickly.

PMRpro
PMRproModerator
in reply to Constance13

It is muscle mass that goes - less muscle = less strength and it is much harder for older people to rebuild that muscle.

"In young, healthy adults subjected to bed rest, the loss of lower body lean mass appears to be on the order of 100-200 g·wk-1. LeBlanc et al. reported a total body lean mass loss of 2.6 kg following 119 days of bed rest in healthy young males; of this, 2.4 kg was from the legs (0.14 kg·wk-1) ....

No studies to date have directly compared young and older adults during bed rest. Nevertheless, data from the only study to examine older adults suggests that the loss of lean tissue in healthy older adults during bed rest far exceeds the losses experienced by their younger counterparts. Specifically, Kortebein et al. observed a 0.95 kg loss of lean leg mass (0.63 kg·wk-1) following just 10 days of bed rest in otherwise healthy older adults [13]. Assuming the rate of muscle loss is somewhat linear during the initial days/weeks of bed rest, this represents an approximate 3 to 6-fold greater rate of muscle loss in bed-ridden older adults."

In simple numbers that means young healthy adults lose up to 200g/8oz of muscle a week on bedrest - so we could lose 1 kg/2lbs or more and most of it will be from the legs.

Constance13
Constance13
in reply to PMRpro

Wow! I wonder how much I'm losing every night - 10/11 hours in bed plus the "relaxing" during the day. I do get up and wiggle around as often as possible. Roll on Spring and sunny weather, I go out far more often when it's fine.

PMRpro
PMRproModerator
in reply to Constance13

But you do get up and walk around every so often anyway - those figures are for total bed rest. Have you never broken a leg and had it in plaster? Nasty shock when they remove the stookie!!!!

Constance13
Constance13
in reply to PMRpro

Not yet I haven't - thank goodness.😂

PMRpro
PMRproModerator
in reply to Constance13

Well don't start now! But your leg muscles are half the size when it comes off - and lots of dark hair that grew in the dark!!!!!

Constance13
Constance13
in reply to PMRpro

😊😊. I read somewhere that hair and nails still grow when you're six feet under!!

PMRpro
PMRproModerator
in reply to Constance13

They don't really - but the skin and fiesh shrink away so they LOOK longer.

Constance13
Constance13
in reply to PMRpro

I believed it!😂😂😂

Your ears and nose get bigger s you get older.... Gravity I presume!

We won't mention certain female parts either!!😂😂

🤣😂🤣

😂😂😂

When I got my stookie off the technicians warned me that my leg would be very hairy underneath. In fact it wasn’t hairy at all but perfectly smooth and hairless which apparently was unusual! But the muscles were definitely very wasted compared to the other leg....

Cyclo5
Cyclo5
in reply to PMRpro

It's a fascinating piece of science. Doctors and scientists have been studying bears. They hibernate for months, similar to a coma, and awaken having used their body fat and having lost minimal muscle mass. They are fit and strong enough to hunt immediately (no rehab needed for them!)

Telian
Telian
in reply to PMRpro

Is that why OH lost 3 stone in 4 days whilst in HDU following resuscitation (Sepsis) and total bed rest? He’s never put it back on and continues to lose weight after another 10 days hospital after Sepsis again.

PMRpro
PMRproModerator
in reply to Telian

Part of it - but with sepsis there is a lot more to it and that much in a few days is exceptional and must have included a lot of fluid. Sepsis is a rampant form of inflammation - and that uses up a lot of energy so the patient typically loses a lot of weight inititally but it does then continue during the recovery phase too. Another episode just puts recovery back

activebeat.com/your-health/...

Telian
Telian
in reply to PMRpro

Thanks Pro, he’s had 4 episodes in 14 months - 3 within last 4 months so does explain the continuing weight loss. Grateful for your input again.

No way! But the smile helped.

Brilliant idea!....

Then I could loose steroid weight sugar cravings and have tapes played for living well being healthy. Oh I would love that!! My muscles are full of lard cheese and cake that’s why they don’t work. That’s my theory. I lost a lot of muscle strength waiting for my new hip then recovering later. I don’t think I’ve ever built it back up.

I've had had both legs in plaster a few times over the past deade and a half. Mine were bald. And so skinny. It took an age to build it back up.

Nice one! I’m with you there. Reduced from 15mg to 13mg 3 nights ago. Been awake with Pred withdrawal symptoms...but, no, I’m not tempted to go back up a bit. Time my body learned the word ‘taper’! Made me smile! Mind, if I’m still like this tomorrow, it may be a different decision. Good luck!

PMRpro
PMRproModerator
in reply to Pixix

The idea of the smaller steps is also to make it more comfortable! Why suffer - if 1mg every 2 weeks doesn't cause upheaval that is still 2mg in a month.

Pixix
Pixix
in reply to PMRpro

I know, i know! I think it was just so depressing putting on a stone in weight in three weeks that I just want to get the Pred intake down a bit quicker! I’m not getting the stiff neck & shoulder aches I had when I reduced from 16 to 15mg, just most of the other symptoms you posted in that very interesting article! Thanks for that, it helped me. But I’m suffering badly from (unrelated to PMR) lung issues from these storms, so whilst I can’t breathe & cant walk far, wrapped in blanket on the sofa, I may as well try & reduce a bit more! If it’s same again in 2 days time I will go up a 1mg for a few days (that’s what I did with the first reduction from 16 to 15!) I’m back on the keto diet, too, but still so hungry I could eat a horse all the time (another reason I want to get the Pred down!) I don’t give in to the cravings, but it’s hard. Whoops, didn’t mean to moan that much...time for afternoon film & crochet, feel like I’m about 100 today, David’s coma sounds nice, but I’m busy planning another two holidays, too, so all good fun...really! S x

PMRpro
PMRproModerator
in reply to Pixix

Eat the horse - it is zero carb! It's the accompaniments that are the problem: the roast potatoes, fries, and the dessert ;)

Pixix
Pixix
in reply to PMRpro

Excellent & true! Made me smile, S x

I’m an ICU nurse. I couldn’t even list all of the terrible complications of being bedridden and on a ventilator for this “coma”. Then months of rehab due to deconditioning.

Thank you Blair. I take it back. D

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