PMR and Cushing she syndrome?

[2roos]

Anyone have tips? I have been reducing my Prednisone I am at 8.5 working to lower it. Now cushings? So depressed and frustrated

[Mary63]

Nearly everyone who takes long term steroids has Cushings to a greater or lesser extent. Hump back, moon face, stick legs are signs of Cushings, and we hear about those nearly every day. . So I wouldn’t feel too bad. Have they said they are going to take a look at your pituitary gland, as it can sometimes be related to that. If nothing was said, I would presume your Cushings is related to pred, and as you lower further those signs will diminish.

All the best.

Mary

[SheffieldJane]

I had to look this up to see what it actually meant. I saw a list of symptoms that are commonly complained of on here. The weight gain, the moon face, the erratic moods, the high blood pressure, the type 2 diabetes, bone thinning. I wondered what it meant to be told that you have Cushing syndrome, as opposed to just side effects from long term use of Prednisalone?

I fully expect these symptoms to go once my dose of Pred is very low. I also read that most cases of Cushing are curable. Not sure if that means something extra is done. I agree, it’s horribly depressing, but as far as I can gather, temporary. All I can advise is keep your nerve, don’t dwell on it too much. Carry on reducing your dose gradually and slowly, and stick with people who understand, like us. I wonder if the way your doctor has addressed this with you has upset you so much? You’ll get through this, we all will.

[Mary63]

I think the doctor was a bit of a show off....using words that made you feel worse, for a condition that is usually a common side effect of long term steroids. Unless he thinks there is more going on...in which case he would want to check what is going on with your pituitary gland. If he did not mention anything like that I would not worry. Just keep tapering slowly until the nasty signs of taking steroids (Cushings) go away.

Good luck

[PMRpro Ambassador]

Cushings syndrome or Cushingoid is just the term they use to describe the constellation of signs we are all so familiar with - weight gain in particular places, the moon face, midriff and neck hump, facial hair etc etc. The medical staff read it and know exactly what is meant even though it is only 1 or 2 words instead of a whole paragraph.

It was the first thing listed on the diagnosis for me some years ago when I was in hospital for something else. It had developed very quickly while I was on methyl prednisolone, it hadn't been so bad on prednisolone beforehand. It is due to excess corticosteroid in the system - above about 8mg is an excess. In our case it is just "syndrome", it is obvious WHY and it is not due to something wrong in the body producing the extra steroid, such as a tumour.

Shortly after I was discharged I was switched to a form of prednisone and I took myself in hand. I cut carbs drastically and lost 35lbs of pred and PMR associated weight gain - I gained weight with "just" PMR because I couldn't exercise and was comfort eating carbs in the afternoons - it's something i normally wouldn't have done but I developed a craving for something about 4pm, didn't know what, just preferably sweet. I had 5 years, loads of time to put on weight! The first day I took pred I didn't want anything - it is unusual but pred puts me off food, and my daughter too. I didn't lose the weight though until I really took control.

If I eat more carbs than usual, I put on a bit of weight. And it doesn't take much, believe me. But after about 2 years of hard work the doctors admit that no, I am not Cushingoid and nothing in my appearance suggests I have taken steroids for 9 years.

So it is just a passing phase - it will go away if you do the right things.

[Omanain]

I found this quite helpful

csrf.net/doctors-articles/m...

[BonnyQuine in reply to Omanain]

Very useful. Compact and detailed.

Thanks.

[Omanain]

Sorry, the link works fine but it wasn't clear what it was about!! It is about pred induced cushings.

[JMM17]

I haven't posted on here for ages but your post has prompted me to write. I was diagnosed November 2016 with GCA. Immediately put on 60mg Prednisolone and accompanying drugs to 'protect' my body. My starting weight was 8 stone 13lbs. I peaked at 10 stone 7lbs even though I was tapering the lbs kept piling on in all the wrong places (face, midriff, humpback). I had proper cushingoid features. Last September I went to my friend's wedding wearing, what can only be described as, a tent! It wasn't until I was below 5mgs that the weight started to reduce and I began regaining some energy. In January 2018 I was told I had type 2 diabetes, probably induced by long term steroid use. Today I am 9 stone 3lbs and am rediscovering my wardrobe! I know it's really hard to be so 'out of control' and very depressing to look in the mirror but have faith, it will resolve itself and you'll be back to your old self. Those who love and care about you always will. They are your rocks. Sorry for the lengthy epistle; I wish you the very best on your road to recovery.