Cushings Syndrome

[CarolynReed]

Hello all,

Wonder if you any of you have any insight that can help me. I have GPA vasculitis, diagnoses Jan 18 and I am currently having treatment for it (Cyclo and Prednisolone- just dropped to 30mg).

Today at my fortnightly check my weight has gone up by 15kg in 3 weeks!! Yep that’s not a typo!! I am still fitting in all my clothes etc but feel very chubby in the midriff and the face is round and the double chin and back hump is here too! My rheumatologist thinks I may also now have Cushing’s syndrome! This is the disease that keeps on giving isn’t it??! I find exercise hard due to fatigue etc but this has scared me. I’m was not a wee slip of a girl to start with!!

So any help? Insight? Or am I on lettuce leaves for the rest of my days!!

Upside is my inflammation markers are responding to the treatment so there is a silver lining to the big old chubby cloud hanging over me!!

Thanks for any help/thoughts.

Carolyn x

[PMRpro]

"My rheumatologist thinks I may also now have Cushing’s syndrome!"

It does seem a shame they can't remember their basic physiology!!

Cushing syndrome is caused by the presence of too much corticosteroid in the body. That is what causes the side effects, including the weight gain. You know where the excess steroid is coming from so it is called a syndrome - otherwise it might be Cushing's disease where the adrenal glands (often a tumour) are producing the excess cortisol. It is far more serious.

Corticosteroids change the way your body processes carbohydrates and also cause random spikes of glucose to be released into the blood which triggers the production of insulin - and the excess insulin lead to fat deposition. That is also the underlying cause of the desperate cravings many people have for carbs or food of any sort and the development of steroid-induced diabetes.

Cutting carbs drastically DOES help, it smoothes out the blood sugar levels and helps reduce the cravings. I lost 35lbs of pred-associated weight and I have no sign of diabtes even after over 8 years on pred.

Cutting all processed carbs (white ones is a common way of classifying them) and keeping root veggies and fruit to a minimum while eating lots of above ground veg (and asparagus), dairy, meat and fish means a much more interesting diet than lettuce leaves. I know - I've done it for the last 6 years

[CarolynReed in reply to PMRpro]

Thank you!

Well I guess I will be relooking at my diet as I will be on Pred for next 2-5 years!! 😳😳😳

But anything to keep the disease in remission.

I’ll miss my fruit as I love it...but I’ll get by!

Thanks for your response. And well done on the weight loss! I’ll be following suit x

[PMRpro in reply to CarolynReed]

Berries are OK they claim. I don't refuse to eat fruit but love veggies so much it doesn't really matter and then choose lower carb options (banana isn't ideal...). Nor do I refuse to eat carbs at all - if I want a pizza or icecream as a treat I have one! But you DO have to be disciplined, you can't eat them too often, and you have to find the level of carbs that works for YOU and know that if you eat more - you will probably gain weight! Cream and all that lovely meat/fish/cheese is fine...

The QUALITY of your diet will improve no end. I seek out good food - and rarely feel deprived in any way. It also helps the illness process - sugar and simple carbs are very pro-inflammatory.

You learn to adapt - instead of a bechamel sauce for example I beat an egg into a Total full fat yoghurt to make caulifower cheese or the topping for moussaka. There are fantastic sites online that give alternatives.

All the best

[Hidden in reply to PMRpro]

How often do you eat root veggies? Do we need to cut these down?

[PMRpro in reply to Hidden]

I eat carrots fairly often, they aren't as high in carb as others. I treat myself to parsnips occasionally in winter. Rarely eat potatoes or other root veg.

You can find good articles online that tell you the carb content if you want to be more scientific about it. But in the final analysis it is YOU - some people can get away with eating more carbs than others. But you have to remember that it all adds up and as soon as you have a decent portion of root veg or fruit it jumps up. A banana and an apple (given the size of the darn things these days) can easily take you to 50g utilisable carbs. Then there are all the other bits in salad and green veg.

[Hidden in reply to CarolynReed]

Has your consultant suggested you take a Calcium & Vit D supplement to reduce the risk of Osteoporosis? If not, may I suggest you ask about it. XXX

[CarolynReed in reply to Hidden]

Yeah I am on that x2 a day and alendronic acid too xx

[Hidden]

i have gone quite parsnip-mad lately. I know I ought to cut it down. I enjoy carrots, but I won't bother with sweet potatoes. I'm also a little worried about increased interest in eating fruits. I won't touch banana, but fruits are generally known for bad fructose. I often wondered if steroid increases our hunger hormone. Not too crazy about blueberries, for acid attack. I appreciated your advice.

[PMRpro in reply to Hidden]

Not so much the hunger hormone as messing up how the body processes carbs. Blood sugar rises, insulin is sent out to deal with that, the BS falls too far: rinse and repeat...

[AmyS1]

Hello ask for a referal to a dietitian. Also see your practice nurse for some help to change your diet. Takling the weight will help to prevent further medical problems. There are even medications avaliable on prescription for weight loss from your GP.

[CarolynReed]

Thanks Amy. I was doing slimming world before I was really unwell and that worked. But I guess much less carbs than SW can let you have. X

[Alliand]

Hi CarolynReed, If you just dropped to 30 mg. of Prednisone, what was your original dose? Must have been high; what you are describing sounds more like the side effects of the prednisone than yet another disease.

I am not a specialist by any means, but all you describe can be attributed to the prednisone. Has your doctor done any follow up on Cushing's by way of tests?

Good luck.

PS You can lose weight on Prednisone; in fact there are some programs for that online. The main thing is to cut out sugar, all soda,processed foods (all have sugar), both because they are inflammatory and cause weight gain. Fish and vegetables and water is the best route to lose; I know exercise is virtually impossible with the fatigue , but control of your diet is doable. Very dark chocolate 85-90% is a good treat in moderation.

[CarolynReed in reply to Alliand]

Hi Alliand

At my highest I was on 70mg a day!!! The dropping down 10mg every 3 weeks.

I am going to look more online. It scared me a bit as he said I have a chance of type 2 diabetes developing!!

So I have looked at keto diet too. Just hate the side effects of getting the disease in remission. But I won’t be broken! I’ll fight it and win!! Xx

[Alliand in reply to CarolynReed]

It is also true that steroids raise blood sugar; not sure about the keto diet; frankliy, I think it's "the mode." But low carb, no refined sugars, fresh veges , more fish, always works. It mat take time, but you will win.

[Suzycat]

Hell, I'm surprised then that I havnt developed diabetes. I've put on 5stones in 2years and 3 months of taking prednisolone. Im taking 3mg a day now after slow tapering couldnt get me below 2.5mg. My problem is my love of all things bad for you, to eat as I have a very sweet tooth. I think the advice you've been given here about cutting carbs is exactly right and sooner or later I'll have to do the same, because otherwise it means more health problems in addition to vasculitis and bigger mama pants! Lol We all have our cross to bear 😣. Lots of patience is required here though, both in terms of waiting for your body to adjust to changes in medication doses etc and not rushing it when decreasing steroids. Good luck☺