Side effects of Pred - Cushing syndrome?
Posted , 9 users are following.
Hello. I joined the group this week after reading so much helpful stuff on here. I was diagnosed end of April 19 having had chronic pain in back of my head/neck over Easter. It was
only on the left side but tests were done and PMG diagnosed. I was not convinced it was PMG so asked GP for more tests which she did but nothing else found so diagnosis stands. 15 mg of Pred was miraculous - all pain went and I had huge amounts of energy. As I started to reduce I have had 2 flares so reduction is slow and I am down to 10mg.
But - I have put on 10lbs - already overweight so doubly unhelpful, mostly added to my tummy. I suffer with extreme facial sweating - face will suddenly stream with water - hair flattened and limp. Horrid. I also have extreme hair growth - backs of my hands, down the sides of my face and even on my forehead. Turning into a little round bear! Thank goodness for beauticians who have removed it.
Mentally I am just not myself. Find any stress really hard to cope with and have dark thoughts. We are in a sad place with loss of 2 dear friends in the last 6 months and most recent news that our son is emigrating to NZ with his wife and our gorgeous grandson so there are very real causes for emotional pain.
Does anyone have similar experience? When I gained weight so quickly I looked on internet and saw Cushing Syndrome. Anyone any experience with this?
I hate this PMR - hate taking Pred. Still not 100% sure I really have PMR. Have lost myself!!!
Thanks for reading.
0 likes, 9 replies
mary19068 patricia63834
Posted
Hi patricia638
Prednisolone will take away your pain but will cause numerous side effects some of which you are experiencing. Preds suppress the adrenal glands that sit at the top of your kidneys these little glands control our emotions help us with 'flight or fight' this is why you are finding stress hard to cope with. I went through all what you are going through. I eventually tapered off pred but it did take up to 2 years for my adrenals to get back to normal. Continue to taper slowly and come off pred if that is what you want to do. It will not be a joyride you will have obstacles along the way and may have pain and have to go back up a few mg. Also, regarding weight try a low carb diet it will help keep the weight at bay. Are you seeing a Rheumatologist who can oversee your tapering?....You have been going through an emotional time and i feel for you i do hope you can get through it all whilst on pred. There are others on the forum who will give good advice...my very best wishes to you...
patricia63834 mary19068
Posted
Hi Mary
Thank you for your reply. So helpful to know others have experienced the same effects of the Pred.
No I am not seeing a Rheumatologist and my GP has said they trust me to deal with the tapering myself. Do feel rather abandoned!
Twopies patricia63834
Posted
dealing with your own taper can be a good thing--you can take what you need and pace it with your pain. seems daunting at first, but once you get the hang of it, you will be grateful. at least you dont have an ogre of a doc insisting you reduce relentlessly to 0.
mary19068 patricia63834
Posted
Hi patricia638
Happy to be of some help patricia. You will always get advice on the forum with regard slow tapering, and other queries you may have, so if you come to a crossroads just ask about your problem whatever it may be on the forum. There are many who have trod this path and can give good advice. It is always mentioned on the forum that we are 'all different' so advice for one may not suit another, all trial and error, you know your body and what it can and can't deal with. You are not abandoned, there are always forum members to listen and help.....kind regards and blessings your way....
EileenH patricia63834
Posted
Weight gain with pred is common but not inevitable. It changes the way our bodies process carbohydrate so cutting them right from the start does help as well as reducing the risk of developing steroid-induced diabetes. Some weight gain may be from fluid retention - cutting salt is suggested to help with that.
This may help you understand how to taper in PMR:
http://www.rcpe.ac.uk/sites/default/files/quick.pdf
although for some people the steps are a bit big and they have problems as a result.
This
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
has helped a lot of people cope with reducing by slowing down the rate of change for any given step down.
Cushing's syndrome is the name given to the effects of excess corticosteroids in the body - it should improve once you get down to about 7mg which is a similar amount to what the body produces naturally in the form of cortisol and which it needs to function. Keeping your weight down does make a big difference to appearance - I lost 35lbs of PMR and pred related weight gain when I cut carbs and even the doctors say there is no sign I am on pred, and have been for over 10 years.
patricia63834 EileenH
Posted
thank you, Eileen. Very knowledgeable response. So helpful.
ptolemy patricia63834
Posted
I found the sweats were the worst side effect. They used to start with my nose feeling funny and I then felt as if I had been out in a heavy rainstorm and my hair felt sticky.
It sounds like you might have PMR as you seem to have had a magical improvement. I could hardly move until I started Pred, a real wonder drug. The important thing is to remember you are ill and you need to look after yourself and not overdo things. The steroids suppress the pain they do not cure you. Remember rest, rest, rest. You have really well to reduce to 10mg since Easter.
patricia63834 ptolemy
Posted
Hi Ptolemy
Thank you for your reply. Totally recognise your description of sweating. Thank you for your advice. It is really hard to rest and not overdo things. As there is nothing visible its just business as usual.
But I will take your advice.
Thank you
ptolemy patricia63834
Posted
I used to be the life and soul of everything and I found it really difficult suddenly having to say NO! I probably have never really got used to it, but I am getting better at it.