The dangers of Steroids and Cushings Syndrome

This is something all of those who have or know someone with Multiple Sclerosis need to pay close attention to!! Well Drs treat  MS patients all the time like its nothing with a potentially dangerous drug, steroids. That’s about the only thing they do use on us MSers when we have flare ups!! Whether it be a bout of optic neuritis, or our legs go numb, or our speech gets slurred or anything thats causing a spell. That’s the first thing drs do, Probably because they don’t know of anything else, or do they??!!! They treat us with 3 or 5 days of IV courses of solumedrol, AKA steroids!!!! and there’s no telling how many or how few of these it will take to cause us to develop in Cushings Syndrome ????I was told by one Doctor that, it would take a huge amount of Steroids to cause this. They were treating me with 1000 milligrams of solumedrol every month  because I couldn’t take any of the injectables, and then with every flare or every thing that happened with my MS they would give me more steroids. WELL I found out the hard way , that it doesn’t take a huge amount of  steroids to cause this  painful disease caused Cushings disease/Syndrome. Which I now have as well. Its called exogeneous Cushings disease. Take a little time and look this up. I am so wrecked now from this, and, can not be treated by steroids anymore either. So I have no idea what will happen upon my next flare. I look and feel miserable. I also developed DVT Deep vein thrombosis, aka Blood clot. So that lead to taking  coumadin and weekly blood draws through my port till we can get the blood levels right. It was always  inconsistent numbers for some reason. So after another DVT scan, it looks as though the Blood Clot is gone, but I am told by the Oncologist as long as I have the port, I will remain on blood thinners. I went  up to the Mayo clinic in Jacksonville and after months ot overnight trips and dozens of tests run, we finally get a few answers, but not to what I thought in my mind would have happened. I was told, yes I had Cushings Syndrome which was caused from the excessive Solumedrol. There was nothing we could do about it besides stay away from Steroids, and it will eventually get out of my system, but will comeback if I have to take steroids again. (Remember, that is how they treat MS Flare ups) I either have to go through this again, or just wait out the Flare up and wait for it to run it’s course. And as far as treatment for my MS, there is nothing else they can do besides treat the symptoms as they occur. I was hoping that when I went up there, they would have a miraculous cure and would make all of this go away.. Not~ Please, please warn others about how this can happen to them from too many of these 3 day IV solumedrol treatments as well. Drs use this like candy to treat our MS, and the resulting Cushings is miserable! . and there’s no telling how many or how few of these it will take to cause us to develop Cushings disease???? Someone HAS to make it known…. Ive got to get to Montel!! LOL I know I may be guinea pig on this, but it needs to be known what may end up happening to so many Msers in the long run? Not only the pain and aggravation of Ms, but I wouldn’t wish Cushings on anyone. Its as you can see an ever changing disease. I found that out just from rubbing hydrocortizone on my hands for a few  days when I had a rash… dumb idea.. Hey, idiotic  me didn’t even think it was a steroid!! I found out different the next morning. If you use steroids at all, look up Cushings Syndrome, it’s worth your time.  I cant get the photos to line up like I wanted to, but I think you can figure  out that they are backwards chronologically. You  can see how quickly these changes occurred. One Dr. thought I was just putting on weight and needed to exercise. He couldn’t explain the hump on my back or extreme puffiness of my face, the blueish lines on my back and chest, or lastly the pain.. I so many times can just look at someone and tell if they have Cushings. I do not understand why  there is so little information on this out in the world. Yet, if you go online, there is tons of info on it. I wonder how many people that have illnesses like  asthma or Rheumatoid Arthritis and being treated with Steroids now have this Cushings Syndrome complicating things. I am sure there are people walking around who have it and have all the symptoms, but Dr’s are leading them to believe it is all in their head. I sincerely hope this article just might help someone.

April 12, 2007

April 12, 2007

April,8 2007

April,8 2007

April 4, 2007

April 4, 2007

April 6, 2007

April 6, 2007

This was taken October of 2006

This was taken October of 2006

2 responses to “The dangers of Steroids and Cushings Syndrome

  1. I too have Cushing’s and have had it since 2006. As you say in your article, it took years to diagnose. One of my doctors even told me I need psychiatric help because I could not possibly have all of the problems that I have. It boggles my mind how little is known about it. I can’t tell you how many doctors I have gone to that know nothing about Cushing’s. I do not have MS and my body naturally overproduces the steroids. Although I got the disease differently than you, I do know how you feel. I am sorry you must go through such pain. Mostly though, I am sorry for how you have to feel every time you have to explain what the hell Cushing’s disease is to someone, especially a doctor who should damn well know.

    • Hi Angela,
      Yes it is so sad that we have to use the Internet to educate ourselves further rather than using our Physichians for the information. I have talked to so many, myself included that the Dr , mostly Endocrinologists, tell us that we are just “fat” and should add excercise into or daily routines more. Now, not that including excercise is a bad thing, because it is good to remain as active as possible, but to blow off any other possible reasons. I think one of the reasons I got my diagnosis quicker than some is because, I took a photo journal of the changes in my appearance. I only used a few in the article as there are many more. There were times I had to bring my Drivers License out to show what I “should” look like.
      Dr’s have to understand that we can “feel” the changes in our bodies. It is hard to explain, but you have these feelings like there is an elephant sitting on your chest, who decides to choke you while he is at it. And if you need to do something simple like fold laundry, wash dishes, even getting dressed after a shower?, forget it, your arms feel like lead balloons. And when you now put them down at your side, they have already taken all the remaining air you had left in your lungs. I mean, for goodness sakes, how pityfull is it to get winded from just getting dressed? Oh well I guess that could be why there are practicing physicians.

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s