Prednisone and metabolism: I have tried researching... - PMRGCAuk

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Prednisone and metabolism

Linny3 profile image
39 Replies

I have tried researching what Pred. does to the metabolism but can't find any info.

I was on high protein low carb liquid diet for about 1 week. Lost 10 lbs which I know was water weight. I developed really bad edema since taking pred.

The next two weeks I added 1 meal a day to the two shakes. Lost 6 lbs.

The next three weeks added 2 meals to one shake a day. My meals are low carb high protein and fairly low calories (under 300) The only snacking I do is fresh veggies.

I have had no weight loss in 3 weeks on 1200 calories a day. That simply doesn't make sense to me. The only thing I can think is my metabolism is being compromised either by the pred. the PMR or yet another disorder. I hate to go in search of another dr. to see if there is something underlying causing this.

I am on 12&1/2 mg of prednisone.

Any thoughts would sure be appreciated.

Have the best PMR day possible.

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Linny3 profile image
Linny3
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39 Replies
HeronNS profile image
HeronNS

I can't find it right now, but I'm sure I've read that your body will adjust to a lower calorie intake and you will stop losing weight, some people even gain. I suppose the answer is to increase activity? There is also something the body does if it thinks it's being starved, which it might on what you currently eat, and the same thing happens, the metabolism slows and you don't lose weight.

Soraya_PMR profile image
Soraya_PMR

How much carb do you consider low? Maybe you need lower!

Are there any artificial sweeteners hidden in anything?

Are you exercising?

Where’s the fat content?

Have you had thyroid levels checked? (Hopefully as a rule out pre diagnosis?) Pred can disrupt thyroid hormones.

Salt content....ask SnazzyD

Seriously 1,200 calories a day (if I could be bothered to count calories) would have me keeling over! My Fitbit calorie calculations last year had me losing weight if I didn’t get 2,000 cals a day. I’m apparently burning 1,500 just being alive, not moving just breathing (Fitbit!)

Marijo1951 profile image
Marijo1951

I've no expertise so won't try to advise you regarding your weight concerns. However regarding the fluid retention, this time last year when I was taking 20 mg of pred per day, my feet and ankles were terribly swollen. I felt rather despairing about this and very stupidly gave several pairs of shoes to my local charity shop. As I reduced the pred, the fluid retention also reduced, and my feet and ankles are now (at 9 mg) back to normal. I really regret a couple of pairs of those shoes...

Linny3 profile image
Linny3 in reply to Marijo1951

I did the same thing with my shoes. I purchased about 5 new pair that are now entirely to large to wear. Fortunately I kept most of my smaller shoes. What a bother this all is.

Marijo1951 profile image
Marijo1951 in reply to Linny3

Yes, I've a couple of pairs that are too loose, but I'm keeping them in case I have any future episodes of swollen feet. As you say, it's a bother...

Linny3 profile image
Linny3

Thanks for the comments. Thyroid levels ok; I eat about 60grams of carbs a day. No artificial sweetners . I have added 4 TBS of good fats. I have started a little exercise but am very limited, but I keep trying.

I have always lowered my calories to under 1500 when I need to loose a little weight and it has always worked. Not this time, so it must be more pred and pmr related.

in reply to Linny3

I still think you arent eating enough. You won't find the same loses now that you had with the "water weight". You have plateaued. I agree with heron that your body has probably gone into starvation mode.

livestrong.com/article/2648...

PMRpro profile image
PMRproAmbassador in reply to Linny3

If I eat 60g carbs a day I do not lose weight. Calories don't work the same way with pred - I have to get down to 20g carbs to lose weight, maintaining is relatively easy and that is what you are doing.

Rimmy profile image
Rimmy in reply to PMRpro

I'm afraid I agree with you PMRpro - as I have mentioned here recently I have to eat 20mg or less carbs to lose weight on 15mg Pred. It all seems rather 'unfair' and to do this I have recently found - my breath from the ketones (so despite the Pred I must be in ketosis at least some of the time) is awful. If I eat a few extra carbs and a bit more food so as not to often have an empty stomach it disappears but so then does consistent weight loss. I am thinking how complicated all this can be for each of us trying to 'outwit' so many conflicting factors ...

Constance13 profile image
Constance13 in reply to PMRpro

Just for interest, what makes up 20g carbs?

As I am not overweight I don't know how I would stick to a diet (of any kind).

C.

Rimmy profile image
Rimmy in reply to Constance13

Not much - even an average - large apple might get you close ...

PMRpro profile image
PMRproAmbassador in reply to Constance13

This shows things NOT to eat (the carbs in 100g of each food)

dietdoctor.com/low-carb#avoid

This page gives links to pictures with carb amounts

dietdoctor.com/low-carb/foo...

A single banana is about 20 - many apples from South Tirol are so big they are nearly 20! But it is the smaller portions of various fruits that soon add up.

I weighed a Semmel (is that what they call rolls in the north too?) when we needed to know what OH was eating - about 50g, half of it is utilsable carbohydrate so one Semmel takes you above 20g in one fell swoop!

Constance13 profile image
Constance13 in reply to PMRpro

No - Brötchen!

So my crispy roll with marmalade and cheese for breakfast, chicken and posh mash for dinner and roll and fish for supper is a no no then!😂😂😂

PMRpro profile image
PMRproAmbassador in reply to Constance13

Not a problem for you unless you are overweight or at risk of diabetes - it certainly would be for me! I could have the cheese, chicken and fish - but if I wanted to have veggies as well I couldn't have even half a roll for breakfast if I was aiming to lose weight.

What's posh mash?

Constance13 profile image
Constance13 in reply to PMRpro

All the fresh veg you happen to have in your home, cook and mash with the potatoes add butter and milk. Delicious!

PMRpro profile image
PMRproAmbassador in reply to Constance13

Haha - you have never seen my fridge - I have a family's-worth of veg for me alone! No - the spud would spoil it and the spuds here are rubbish anyway! Only designed for Knoedel I imagine and most carb here is pasta (as in Spaetzle or local ravioli) or bread based.

Constance13 profile image
Constance13 in reply to PMRpro

Here in "Bauernland" the potatoes are delicious.

PMRpro profile image
PMRproAmbassador in reply to Constance13

I know - I drool at the spud displays when we are in Bavaria or Austria - but here there is no demand...

SnazzyD profile image
SnazzyD

I agree with others, not enough calories and still too much carb. 60mg (assuming about 3 slices of bread a day) would be too much to lose weight and probably a bit iffy long term to maintain it in order to allow myself 2 glasses of wine a week and a little 85% choc.

I obviously bang on a lot about salt, but even the slightest salt when I was above 7mg would make me put on fluid noticeably. Once I got to below about 7mg I needed a little salt or I felt unwell so was able to start eating sauces again.

Soraya_PMR profile image
Soraya_PMR in reply to SnazzyD

You keep going re salt! The doctors aren’t giving the info!

SnazzyD profile image
SnazzyD in reply to Soraya_PMR

I just don’t get it. When I went for a check up once the Rheumy of the day thought I wasn’t absorbing the Pred and therefore couldn’t have GCA because I was slim with good HbA1c. I said words to the effect, “look at my face, my beard and panda face its is bit of a giveaway” .My GP last week said I was a fantastic case study because I was in good shape and asked what my secret was. It’s odd that’s it not part of the care.

Soraya_PMR profile image
Soraya_PMR in reply to SnazzyD

It seems they’d rather tell us of the dangers of pred, rather than accept we need it for a prolonged time and teach us how to manage pred sensibly.

nickm001 profile image
nickm001

When you lose weight, you lose fat , which is what you want and unfortunately you lose muscles as well. Fat does not burn calories, only muscle tissue does. That is the key. You can either reduce even more carb intake OR you can exercise and help bring your metabolic level higher. I know that most of the participants here are ladies and the preferred method is reducing carbs. I have gone the opposite way. Partially thanks to overall good health ( other then PMR) and also being it excellent shape before PMR, I have gradually over the first year increased my exercise level to the point that I can ( and do) eat completely balanced diet that is mostly fresh vegetables and fruits, and at least 50-60% of my calories are from carbs. My weight has been within 2Kg after 3.5 years of PMR.

Lastly weight by itself is not as important as monitoring and maintaining percent fat in your body. I bet that although you have lost weight overall, you have actually increased % fat in your body and that is what lowered your metabolism .

I forgot to mention that weight was not my concern. When I was diagnosed with PMR I could not get out of bed by myself. I asked myself do I really want to live like this and then made decision that I will do everything in my power to get back to the way I was before PMR. I got into exercise because I wanted my life back.

SnazzyD profile image
SnazzyD in reply to nickm001

Hello, I must stick up for the ladies here. The day before diagnosis and high dose Pred I was extremely fit and active, keeping in shape in order to spend my holidays all weather mountain walking with heavy pack. Pred floored me and ate my muscles such that even minor household chores would cause pulled muscles. The exercise I was previously accustomed to was off limits and still is 2 years later. I am now trying to get fit enough to get to the gym. Walking has been the only activity I have been able to do. You are very lucky to be able to do what you are doing.

Cutting my carbs and salt was the only way I could keep my blood sugar down and avoid fat increase when I was unable to rely on large muscle groups to burn it off. Yes, weight as a measurement is a bit iffy because of the imbalance of muscle and fat and fluid retention that occurs but it’s easy. Waist measurement is pointless because of the change in deposition areas. Until such time I can do proper exercise I’m stuck with this regime, I’m getting there but it is awfully slow.

bunnymom profile image
bunnymom in reply to SnazzyD

Everything with PMR is slow isn't it?

PMRpro profile image
PMRproAmbassador in reply to bunnymom

Except a return of symptoms if you overshoot the right dose ...

bunnymom profile image
bunnymom in reply to PMRpro

Amen to that!

nickm001 profile image
nickm001 in reply to SnazzyD

I completely understand you. Before PMR I was training for triathlon. Few weeks into PMR and before pred I could not get to the bathroom by myself. Turning in bed and putting cover over myself was testing the limit of what I can do. After dx and pred most of the pain was gone, but muscles were not the same any more. Could not tolerate any effort. So I started walking and doing stretches of area that was impacted ( shoulders and hips) to regain flexibility. I still do it several times a day. The key to my recovery was going very slow and increasing the length, not speed. I picked 2 sports biking and swimming because neither one of them is weight bearing. I always would go about 60-70% of the max, never higher. That is because I read some research from 90's that endurance activity at low level is beneficial while on steroids and helps muscle recovery. My guess is that increased blood flow during exercise helps to counter vasculitis effect of PMR. After a year I started experimenting and tried High Intensity Training in the middle of my long bike rides - something like this: 30 min of easy pace, then 60 sec of MAX effort followed by 90 sec of recovery -repeat 5 times the cycle. Then I would go back to my easy rides for another 30-45min . It did wonders for me. My level of fitness gradually increased until I could match my pre-PMR times. This worked for biking and swimming. When I tried to go back to running I ended up with injury and still can't run. But hay I got 2 out of 3 sports back... I am currently going for knee rehab and hope to run some day... That's my story.

3.5 years into PMR and at 2mg of pred at the moment...

SnazzyD profile image
SnazzyD in reply to nickm001

I still think we are in different camps. I am well versed in building up after illness having had cancer treatments and Achilles ravaged by Quinolone antibiotics, but this has been something else. My muscles became quite damaged within a few months of high dose Pred for GCA (no PMR). Once my large muscle groups gained a bit more bulk below 10mg I have had problems with my tendons and ligaments, which take longer to heal and small accessory muscles. It’s going to be very slow

nickm001 profile image
nickm001 in reply to SnazzyD

I do realize that we all have different "baggage" and even this awful sickness impacts us differently. But things improve over time, so lets not lose hope.

BTW talking about ladies, my OH was also doing triathlons and beats me in running any day of the week.

in reply to nickm001

Fartlek - but basically interval training​. No chance of cycling for me as my balance gone. Before i started with non-pmr issues i used to cycle at least 50miles a week to work, then weekend and holiday cycling uphill and down dale (Pyrenees and massif central a couple of times), squash a couple of times a week, swimming most days and the gym 3 times a week. Didnt have a car fir 5 years so walked and cycled. Now...walk a few steps, stop stretch, throw ball for dog with golfers elbow. Sit for a while waddle back to the car. Try and get out if the car...i am tbe insect invader in tbe mans bidy on men in black. Today my neighbour was half way to.me as i was struggling to get out. I managed it just before he got to me. If i try to raise my arms above my head tbey stop at 💪 ...without the muscle now. One day i may win the lottery, flatten tbe city i live in and buy a cool tricycle. 🤞

nickm001 profile image
nickm001 in reply to

This, like any other illness will pass. And the sun will shine again on you above Pyrenees . If we lose hope, then nothing is left, so dont... ever!

PMRpro profile image
PMRproAmbassador in reply to

A dog that plays golf????????????

What is difficult about getting out of the car?

in reply to PMRpro

Only badly....20handicap....its my back and a left leg that sometimes has to be lifted out. I get half way and realise my left leg still thinks its car time. I have to manoeuvre it out. Pre PMR and reason i drive an automatic!

PMRpro profile image
PMRproAmbassador in reply to

Not you - the dog!!! Read your post...

Not the standing up bit then ...

Telian profile image
Telian in reply to PMRpro

Wasted it was!

Telian profile image
Telian in reply to PMRpro

You’re on the ball today pro!

Noosat profile image
Noosat

Don't know what kind of carbs you are eating. Processed food ones are bad. Those natural ones such as in legumes are O.K. I have not gained weight with taking prednisone, and just concentrate on eating a healthy diet. This for me contains lots of organic fruits and vegetables, very, very little meat, has to be free range, some wild caught fish, have only used olive oil for many years and butter from free range cows, eggs from same.

Remember muscle weighs more than fat, pound for pound. So you could be slimming down and becoming more muscular.

Linny3 profile image
Linny3

Hmmm that is an interesting thought. I have been able to do a little weight training.

Thanks

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