Cushing's syndrome

Hi Charlotte, I had never heard of Cushing’s Syndrome until the past few weeks..... then you come along and I hear it again.

My brother, who was my donor for my two Allo SCTs is having major issues with various medical issues and his weight is out of control. He is 6’ 3’ and has always been a well built lad, but for the past few he had put on a lot of weight especially in his legs.

He has a lot of trouble with his knees due to a few injuries when he was working on a deep sea trawler so steroids have been part of his life for years.

Over the past few years his knees have got worse so his steroids have been put up and it’s like a vicious circle.

He is having trouble just like yourself, he actually can walk that well at the moment and just this last weekend he was taken in to hospital again but no real conclusions were achieved. They are getting him back in for a CT in a few weeks time just to have a good review.

I do hope you find away to negotiate a positive way out of this ((hugs))

Had us also on great meds so it all a very fine balance for him and his team

Hi Charlotte,

When I was at my most poorly, I had the moon face which I believe is one of the signs of Cushing’s Syndrome. I also remember the weakness in my legs when I had to almost crawl up the stairs (which was not normal for a relatively fit 36 year old). I didn’t have any problems with weight distribution as I was quite underweight at the time having suffered from GVHD for several months. Mine all went away as soon as I came off prednisolone. I had to be tapered off it quite slowly as I was on a very high dose (I think it was a few months before I came off it completely), but when I did the moon face went away and I slowly found the strength in my legs returning. I think it is quite normal to get this when on prednisolone, especially at the higher doses, so I’m really hoping that when you come off it that you will experience the same and you’ll find things getting more back to normal. I’m really feeling for you as whilst prednisolone definitely helped save me when things weren’t looking so good, I found it one of the worst drugs in terms of side effects. It also really affected my moods so I definitely understand why you’d be feeling low. Here’s hoping that the change to hydrocortisone will make things better for you Charlotte.

All the best

Greg

Hi Charlotte,

yes I remember reading about Cushings when I was training as an OT. Just be ready for a very slow weaning off and then maybe a similar problem with hydrocortisone which of course is also a steroid. I hope your team can get a good balance for you. It will need to be carefully treated. 

Mood swings are also awfully common with high doses of steroids, I had dexamethosone as a part of a general anaesthetic, probably a fairly hefty dose with another couple of hefty drugs to prevent me being sick; I could barely sleep that night and then really got the weepies partway through the next day! 

Hugs xxx

You are not alone. Post-transplant, I have now been on high-dose steroids for 5 years in an attempt to control Graft-versus-host-disease. I had the moon face, muscle wasting, extremely thin skin and fat buildup in the gut and my shoulder blades. We are ever so slowly trying to wean me off steroids as to quick a reduction triggers my immune system and begin again. It is a long process and one must develop the patience of a Saint to endure it. Yet,focusing on the blessings we have received and occupying oneself with what one loves is a good distraction.