Steroid induced Cushing's

Hi, 

I'm so sorry you're having to deal with all of these symptoms of Cushing's.  Steroid-induced or not, you will find someone here willing to help and give advice I am sure.   So, please don't feel alone or like you're putting anyone out here because your case is a bit different.   

I do not have steroid-induced Cushing's myself but all I've read says that once the steroids stop, symptoms should cease.  Maybe it will take a bit for the body to re-compose itself, but once you stop flooding the body with the excess steroid, it should hopefully start getting better.  You may need to wait a full 10 months to see a a break in the symptoms.  Let's hope that is the case because they are miserable symptoms indeed.  I'm sorry I don't have much more information for you in regards to steroid-induced Cushing's, but I am always here as part of a support for you for all of the symptoms because they are all the same no matter what the cause is.  Don't hesitate to contact me back if you ever just need someone to listen or to brainstorm or anything like that!  It took me just shy of 20 years to get where I am with test results and I still  don't have a definitive diagnosis.  But as a result of that I've come to be pretty good with researching and understanding things if you ever need to talk. 

I do hope someone else that has experienced something similar to you touches base and can help you through this and maybe even give you some information that will bring you some relief physically and mentally.  

Be well, and much luck to you in feeling better. 

Alicia 

So sorry to hear at you are suffering so much.  I had Cushing's Disease from a pituitary tumor and I'm not that familiar with Cushing's Syndrome (steroid induced).

i just wanted to let you know that I had all of your symptoms at the height of my illness right before surgery. I could not even walk 5 feet without being so out of breathe.  My belly was so big I could not tie my shoes or even put my socks on by myself. My resting heart rate was 150. i could go on and on. I feel so badly that you have two little kids to take care of while you are going through this. it must feel like a nightmare.

I imagine that other Crohn's patients might be having similar problems that you are having.  Are there any forums for that disease that will help you. 

There is a website called Cushingshelp that has a ton of archived posts and info that cover all different types of Cushing's. 

I know that it can be very difficult to wean off of steroids when you depend on it to help your symptoms.  I had to take steroids after my pituitary surgery because my pituitary gland wasn't working on its own.  I weaned rather aggressively and the gland started working on its own.  But, it was very hard to come off the steroid.  I was very, very sore with terrible aches and pains....I was extremely nauseated...it was just horrible.  

With Cushing's, I had to learn how to be very patient. I wanted to be healed and back to normal so badly. 

Is it going to be difficult for you to wean off the steroid? An doctor should be helping you with this.  I am not sure what symptoms of Crohn's Disease are helped by taking steroids. I am guessing it all depends on how bad your flare ups are. Did you have surgery for Crohn's?

I had a co-worker that had Crohn's and it really shook her whole world.  This was many years ago.  She had major surgery and went through so much.  Now, it is 20 years later and she is doing awesome.

Cushings is so rare, but there is a lot of info on the Internet if you search.  I got diagnosed in 2002 and relied on the Cushing'sHelp forum that I mentioned earlier. I was lucky that the Internet was available as I would have been completely lost without it.

Do you have any skin issues? I had to take low dose antibiotics every day for over a year because I would get horrendous boils and acne....this is before I knew I had Cushing's.  I also stopped getting my period, I had diabetes and was bruising very easily. My ribs hurt so bad because my belly was crushing them.  My face was so round and my far neck, hump and clavicle pads were choking me....especially at night.

The good news is that once you stop the steroids, all your symptoms will go away.  Mine went away quite rapidly after surgery. 

My resting heart rate took a while to slow down.....that was a scary symptom.  

I hope you can find a good endocrinologist that will listen to you and guide you.  I am hoping that you will be able to wean off the steroids in a decent amount of time.

I am thinking of you and.....wishing you the best.  I know life is a huge challenge for you right now.....I was in hell during my illness.  I never, ever EVER thought I would get better.  But I did.  I am then thousand times better now.

Take care of yourself.

Dear Hollaka

I have been a Cushings survivor since 1981, I have dealt with this awful disease. I am the first person diagnosed with "cyclic" Cushings in the

U.S., in 1989. I had pituitary surgery in April 1989, it took them 9 years to diagnose me and because I had such high cortisol in my system for so long it did a number on my body. I have had 16 hand surgeries due to degenerate bone disease caused by the Cushings, I've have kidney stones 8 times and my right kidney removed, which they injured my bowel taking it out in 2014, That caused an enormous hernia, that surgery in 2015. I've had my gall bladder out, my right lung accidentally punctured, four other hernia surgeries. But worst of all, I was diagnosed in January 2016 with another pituitary tumor, this time the size of a quarter, that was removed in May of 2016. AND just yesterday I got the results on my MRI with dye that I now have a new tumor the size of a quarter again on my pituitary area. I see my neurosurgeon on Friday. That is what is so devastating

about this disease. It's never over.

So this is what I'm going to tell you...having high amounts of steroids in your system to try to cure something else is ludicrous. ...you may be trying to help one illness, but in my opinion, the high steroids are going to cause other horrendous medical issues that are going to not show up until later, and along with the

steroid symptoms you are now experiencing, it is NOT worth it. I would get a second opinion on how to control your Chrons disease and I do know that with the correct diet you can help your Chrons

I am pretty sure it's an extremely low carb diet and high fat diet...look into that.

Believe me I'm a walking example of what high steroids create...and yours are pill induced...please please loo into a different way to try to take care of the Chrons. ..the Endocrinologist is right. ..the reason is your Cushing symptoms are pill induced...he can not get a honest cortisol reading when you are taking steroids. Get a second opinion

On how to take care of your Chrons without steroids. Or at least a lot lower doseage. I am thinking totally off the steroids as soon as possible. Please know that everyone here is open and honest and care about your situation and how you are doing. I hope I've helped.

Hi,  I too am so sorry that you are having to go through all this.  Who do you see for your Crohns?  Surely they can advise you on how to treat Chrohns without steroids.  I can think of a couple of famous people who have Chrohns but do not have the symptoms of Cushings.  They are awful symptoms and hard to deal with.  I had excessive hair as well.  I agree with the others that you need help to control your Crohns without Steroids, then when your readings are based on your Cortisol not excess Steroids your Endo will be able to help.  I am hoping that there may be one of us who has had the same problem.  Are you on a Crohns help website?  Sorry not to be of more help but as the others have said we, as Cushies are always here for you.  Take care.

Thank you all for your replies. I'm gonna speak to my GP again tomorrow as chest pains getting worse & now gagging as face is so swollen.  My BP has come down with the BB's but still tachycardic.  Had DEXA scan to check bones this morning & went to the walk in clinic cos of chest pain & told 3 hour wait so left (couldn't bare the thought of sitting there for 3 hours before I was even seen).  

I am on Humira for my crohns but only had 3 doses & can take 6 months to kick in and cos I've been on steroids a year my gp wants a 4-6 weekly taper cos of the risk of rushing so could still be another 10 mths of steroids & feeling like this. Meanwhile I'm struggling to breathe & feel yukky.  I do feel that Cushing's is not really well known about, especially steroid related Cushing's. I'm on a crohns site & I chat to a lady who's daughter has Cushing's due to steroids & hers developed into adrenal deficiency after the steroids stopped so do feel I should be monitored by an endocrinologist as well as the gastro. All fun & today I just feel blah with it all 😞

Please do not give up.  You know your body better than anyone else and Cushing's is so hard to understand.  See your GP again and please tell him all your worries and how scared you are!  You need to be monitored carefully during your withdrawal from the steroids by experts.  There is light at the end of the tunnel and it is not an oncoming train!! Keep us informed please, it is a long haul but we are here to help.  The lady whose daughter as Cushings etc. what path did she follow with her daughter?  Take care.

 

Hi,  I think your GP is quite right, sometimes the only way is to go to ER and let them sort you out and check your heart etc.  It is important that your family understand what a trauma you are going through and help you as much as they can.  Don't worry about how you look.  I have also been slim but with the Cushings I ended up a size 22 and had to wear maternity clothes.  I am now back to a size 10!!  Do go to the hospital today, your health is so important especially as a single Mum.  I really hope it goes okay and that ER can help you.  Let us know how you get on and stay strong!

OMG I cannot believe that people are so useless when it comes to Cushings! How do they expect you to cope?  I am at a loss to advise you.  If one man said go back after 3 days I guess that is what you will have to do.  Can you ask for a GP home visit or ring the NHS line?  I wish I could help more, feel useless.  I hope that someone else may be able to help on the forum.  Can I ask what region you live in or are you abroad?

as you say whoopy doo!  I guess it is a start but it is a long time to wait and your Gastro person will not be experienced in Cushings.  If between now and then you are still bad I reckon you should call the NHS line, they may think you need a hospital emergency visit again or an emergency GP visit.  I would have thought that in your situation any one would see you need help especially as a Mum.i am in the South West but maybe there is someone else on the forum who is near you.  Come on you Guys this lady needs our help.  Take care.  Keep in touch.