[slip]

I was on cellcept and steroids for about 2 years and I started getting psychotic symptoms and then got paranoid. I couldn't handle it anymore and took myself off it (would not advise this but I couldn't cope anymore).I suffered for another 6 months until I got on some proper mental health meds.
anyone else experience the same issues?
btw once I got off the steroids about 3 months later the cellcept-steroid combo quit working on my MG
now on Immuran and mestonon but only have limited results

thanks

randy

[scrubbs]

On cellcept and prednisone 21/2 years and no psychotic symptoms.

Tony

[tysondouglass]

I have gotten some mental problems along with prednisone, tried coming off and was put back on due to crisis- im dependent on it.

it all depends on what mg you are on i believe and for how long.

[AnnieB3]

Randy, All of my emotions act like they are on, well, steroids when I take steroids. I can't do them. They also cause bradycardia, probably from fluid retention. And, yeah, really not a good idea to go off of steroids without doctors monitoring you since you can have an adrenal crisis and die!

Have you tried IVIG or plasmapheresis?

Since there can be other things that make MG worse, do you have yearly checkups with your primary to look at things like your thyroid, metabolic panel, B12, vitamin D, etc.?

I hope you can find a balance that works better for you. Hang in there.

Annie

[PMCPMC]

Originally Posted by slip

I was on cellcept and steroids for about 2 years and I started getting psychotic symptoms and then got paranoid. I couldn't handle it anymore and took myself off it (would not advise this but I couldn't cope anymore).I suffered for another 6 months until I got on some proper mental health meds.
anyone else experience the same issues?
btw once I got off the steroids about 3 months later the cellcept-steroid combo quit working on my MG
now on Immuran and mestonon but only have limited results

thanks

randy

I talked a hundred miles an hour before she had not time to take her morning coffee.
I became a shopaholic.money no object.
I even wrote back to the company doctor saying what I thought about him.

[teresakoch]

Originally Posted by PMCPMC

I talked a hundred miles an hour before she had not time to take her morning coffee.
I became a shopaholic.money no object.
I even wrote back to the company doctor saying what I thought about him.

It's funny, because I am convinced (due to my response to starting on a gluten-free diet a year or so earlier, which allowed my immune system to recover for a short time before my MG diagnosis) that all of those problems can be traced back to an underactive immune system.

When I had to take a short-term high dosage course of steroids (60 mg/day), I found myself eating anything that wasn't nailed down, getting angry at everyone around me, and finding that my ability for self-control slipped away. I was only on them for about 2 weeks, but the adverse reactions were IMMEDIATE!

On anything below 20 mg/day, generally physicians will not see these reactions (I stopped being ravenous, angry, and overly impulsive when I went back down to my normal 10 mg/day dosage, and became much more pleasant to be around - I have remained gluten-free since April, 2008). Anything above that, and they start seeing "monsters" popping out of patients....

So no, you weren't imagining things - I just wish doctors would recognize that these issues are (underactive) IMMUNE SYSTEM problems in other people who may not necessarily be on steroid treatment.

Steroids DO suppress our immune systems, and our immune systems do so much more than just protecting us from illnesses -

[erinhermes]

INITIALLY I LOVED PRED! WAS @ 80 MGS FOR A LOOOOOOOOOOOOONG TIME! IT FELT SO GOOD TO HAVE ENERGY AGAIN! I COULD ACTUALLY FEEL IT HITING MY SYSTEM.....ON THE OTHER HAND, I WAS FINALLY ABLE TO SWALLOW AGAIN - WENT A COUPLE OF MONTHS WITHOUT EATING AND TOWARD THE END COULDN'T EVEN FINISH AN ENSURE - MAJOR, MAJOR CRISIS! SCARY STUFF!

I GUESS THAT'S WHY MY BODY WAS SO RAVAGED BY THE TIME I ENTERED THE ICU.........

DO I MISS HAVING THE ENERGY OF A 2 YR OLD? YEPPERS! DID THE PRED AND CYCLOSPORINE MIX CAUSE CUSHINGS? YEP? AM I NOW HALF A FOOT SHORTER DUE TO CHRONIC BACK FRACTURES AND GIVE MYSELF FORTEO SHOTS IN MY STOMACH TO REDUCE FURTHER DAMAGE? YEP!

I WAS ACTUALLY DOING GREAT UNTIL THE CYCLOSPORINE WAAS INTRODUCED......ONCE THAT HIT,, I HAD PERMANENT COLD SORES AND WENT UP A SIZE A WEEK..........IT WAS AWFUL!

I GUESS @ THAT POINT ANYTHING WAS BETTER THAN SLOWLY STARVING TO DEATH........

LOVE,
ERIN