Posted , 12 users are following.
hi, i was diagnosed with PMR and GCA 14 months ago and have been on steroids since.
Even though i am on a continual diet i am gradually gaining weight! My appetite hasnt increased so i cant understand why im still gaining weight!
I have an underactive thyroid so wondered if that is having an effect or could i have cushings syndrome? I have fatty bits around my tummy and in my face. I bruise easily too
0 likes, 11 replies
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maureen07256 anne28129
Posted
Same with me including the underactive thyroid ,I would say it is the steroid I am very careful what I eat and try and exercise by walking and dancing ,as i had a flare up ive had to increase my pred up to six mg a day , I tend to lose my appetite too ,the continual fight of tiredness to maintain some sort of exercise is soal destroying . Mo
Michdonn anne28129
Posted
Anne, unfortunately it looks like you may be suffering from some of Prednisone side effects. I refuced my weight with being active mostly walking. Good luck stay positive. 🙂
missmagwumps anne28129
Posted
Sorry to say it is probably the steroids - I have put on 2 stone since July - with odd fat pads dotted around ie shoulders/neck, face, tummy...doc says it is steroids and not to stress about it as not much you can do with side effects from some drugs but not everyone gets same side effects...I seem to have had the lot...including some erratic heart palpitations... be glad when I'm off them tbh as am reducing at a fast rate - am down to 5mg now from 20 mg last July....but I don't believe PMR was correct diagnosis for me....seeing rheumy early march - so will see...x Good luck x
EileenH anne28129
Posted
You often develop Cushing's syndrome when you are on pred for PMR/GCA as Cushings is due to an excess of corticosteroid in the body. But you know where it is from - the tablets - so it isn't Cushing's disease which is due to excess production of steroid in a disease state.
Is your hypothyroid being managed properly? Being on pred suppresses the production of TSH so if it looks OK it may really be raised showing you need more thyroxine.
What sort of diet are you trying? Cutting carbs is the best way to go about losing weight when on pred. Pred changes how your body metabolises simple carbs, causing raised levels and more insulin production - and excess insulin makes the body store excess glucose as fat deposits in certain places.
anne28129 EileenH
Posted
Hi Eileen
I am on thyroxine and have regular blood tests
I have been told my potassium levels are low at the moment! Not sure what that means!
anne28129
Posted
sorry forgot to say im on slimming world
I'll cut out the carbs.
What about fruit?
Anhaga anne28129
Posted
Go easy with the fruit. It is loaded with sugar. Don't stop eating fruit but only in moderation. And definitely not fruit juice.
Anhaga anne28129
Posted
You can get more potassium from some fruits and vegetables, quite common ones I think, like bananas and potatoes, broccoli and cantaloupe, and many other fruits and vegetables. Potassium is an important element and we need a certain amount to regulate things like water retention, muscle health, lots of things.
EileenH anne28129
Posted
As Anhaga says - fruit is loaded with sugar, some are worse than others. The website https://www.dietdoctor.com/low-carb has good easy to understand info
https://www.dietdoctor.com/low-carb/visual-guides
shows what has what in all sorts of foods - and there is a similar page showing what to avoid.
Elijo anne28129
Posted
Hi Anne, I had the full face when I was on a higher dose of pred. Advantage: No wrinkles! It gradually went away & back to normal as I reduced the pred. I had gained about 10 lbs. However I lost it differently, I was in rehab several weeks after I fell resulting in broken pelvic bones, then had to be sent back to hospital since my electrolytes were all off, my sodium sky high, and was very ill. Not the best way to lose it! I've been off pred since last June (no more PMR!) and generally eat normally, weight stabilizes. Like Eileen said, reduce your carbs, and exercise as much as you can tolerate. Good luck!
Tinapoly1 anne28129
Posted
I was diagnosed around the same time last year & you have Cushings Syndrome without a doubt. I eat like a bird & am 55 lbs up which is devastating since I have always been thin. My face & body are unrecognizable & I have lost so much of my hair which was so thick & long a year ago. My skin is so thin & I bruise very easy. I have no hunger yet can't eat any less since I eat too little already. My endocrinologist told me that long term Prednisone shrinks our adrenal glands so much that they no longer have the calorie burning hormone working & one day if I get off this awful med. he said it usually takes a full year for the adrenal glands to get back to full size & function. Last month I got up from the couch & took one step & felt a pop at the base of my calf. I took another step & knew something bad happened so I had to limp. 3 hours later I limped a short distance & I screamed in agony & cried from a pain like no other. I got an MRI & the main calf muscle partially torn away & another part of it is shredded with a large hematoma. The orthopedic surgeon said it was from long term Prednisone. Horrifying to think that just taking a step could do such damage & they don't do surgery unless the entire calf muscle tears off . I HATE THIS DISEASE & HATE TAKING STEROIDS but grateful I can walk with this drug. Sorry you are going through the same thing.