Back again
 

Hi all :)
Don't know if you remember me, I was here a little while ago.
Anyway, I slowly went crazy, I already told my docs my feelings and thoughts got weirder by the day, due to the nice prednison. Still nobody listened.
In the end I gained 35 kg in mostly water (even my face has purple straie), had diabetes, all kinds of problems and went totally crazy. I deleted my account here because I was convinced someone would break in, use it for criminal stuff, I would end up in jail being raped and being apart from my loved ones. For real!
I started hearing voices, and seeinf things that weren't there.
Yeah, so kind of a psychosis you may say...all because of a few of those lovely little pink pills!!
I locked myself up in the bathroom for most of the day, crying and being weird.

Anyway,. I lowered the prednison dosage...and what a wonderful thing it was: I slowely got more and more my own head and thoughts back!
So, I'm happy to say Im not prednisone crazy anymore, but what a terrible thing that is!
I still have anxiety attacks and depression sometimes, but not up to that absurd point where you believe your only option is to kill yourself. I am still on a fair amount of prednison, but lowering more is not an option, I wouldnt be able to breath.

But, now my MG is back quite severe. One of my eyes is totally closed, I can't walk, dress myself, eat or drink normal food, my speech is like "are you having a stroke or are you drunk" and Im out of breath all the time.
So that kind of sucks, but still, I got myself back :)

I understand how it feels to lose your mind. Mine has also returned.

I think that you need to try to find another way to suppress your immune system. Have you used cellcept or immuran? Also, have you talked to your doctor about other corticosteroids?

I hope you feel better and stay sane. Be cautious about the psychoactive drugs that your doctor puts you on as these may make you more crazy.

Hi,

are you the RavenC who send me a personal message before you suddenly disappeared? You wanted to ask me someting?

Good to hear youre 'back on earth'n again.

I too had this reaction from prednisone. I thought my ex husband was trying to kill me. Every time a tail light reflected on my glass front door of where I used to live I thought my ex was aiming one of those guns with a red beam on them at me. My heart also beat really fast, so I told my doctor and he took me off the pred. My mind was somehow translating real things the wrong way. The other day I had a cortisone shot in my heel for a heel spur, and I even warned the doctor about this, but he said it shouldn't affect me too bad. Thankfully the only reaction that was negative was my foot was in more pain and stiff for a couple of days. I wonder if there is much difference between taking the prednisone in pill form and getting an injection of cortisone. This is a very real reaction that some people get from prednisone. It's called "Steroid Psychosis" and the symptoms should stay away once off the Prednisone.

Oh, how horrible! I'm so glad that your mental illness subsided when you reduced the Prednisone. What a terrible thing to go through. I can't even imagine.

Can you remind us what treatments you're getting for your myasthenia symptoms? Have you done IVIg?

Abby

I was wondering why you name appeared the way it did a few posts back! I'm so glad you're feeling better.

You're really lucky. Steroid psychosis is very real. It had the same effect on me in 1995. I can't say it was much better in 2005 during my MG crisis but they did use a slightly different drug. If you have a good doctor, that might be an option for you.

I'm so sorry for all you went through. I totally get it. Of all drugs, I think steroids are the ones I love to hate.

I don't think having MG is a criminal offense yet, though some neurologists might think we're certifiable.

:hug:
Annie

Do you know what Ravenclaw?
There are two weird things I have discovered about writing on forums...

1) Sometimes when you do a google search about a certain topic and you suddenly see something
you yourself have written in one of your own posts staring right up at you :eek:
Yeah! Finally someone with the same symptoms as me...OH! Wait!! I wrote that!!!
It´s a little unnerving to see your own writing out of its original context :cool:

2) That you get to know and appreciate people but don´t always know what has become of them.
You wrote wonderful answers to a lot of posts and then suddenly disappeared off the face of the forum
and I thought something was up and realized I may never know what that something was.

I am so glad you got yourself back - and we did as well :)

Anacrusis

Dear all, it's nice to have a warm welcome back.

Celeste, yes I have tried so far: mestinon (use 6 x 90 now, it doesn't do much, no side effects), imuran and cellcept (both didn't do a thing for the mg), methotrexate (did help a bit, but liverproblems in a few months), prednisone.
The other immunosupressants you have are kind of tricky, mostly because of the kidneyfailure thing, and the fact that I'm a young woman: risk of infertility and longterm cancer are just too big. And well, I really would try them if I knew they would help, but the other 3 didn't.
Ivig is tricky: I have also cryoglobulinemia, which makes the risk of acute kidneyfailure higher. And I have a history of anafylaxis (severe allergies) so that makes it scary to try rituximab, plasmapheresis or ivig...
But I guess I don't really have choice, but I find it very hard to decide what to try next. I mean, the medicine I tried so far got me in the hospital either way: they didn't work so the MG really got to me, or it did something stupid like making me crazy or eating my liver.
My neurologist (who is considered one of the top docs in MG) referred me to another neurologist, so that would be my...6th I believe?

Matilde, gee, I don't know! To be honest, I've done weird things in the last few months of 2012, being totally weird to people, and I don't know what more...I will send you a pm.

Quandry, exactly! If someone looked at me, I went totally paranoia, I put away cellphones, computers, camera's because I was convinced "people" tried to watch me and whatever more.
I don't understand how they can not call this kind of side effect serious...I believe this is much more damaging then all the other side effects like diabetes and heartfailure (I have them both because of it). Because it destroys your feelings, social life, thoughts, ánd can be a fysical harm...I didn't eat well, did't use my meds correctly, didn't clean myself properly, tried to kill myself. I really hated myself so much, I thought I was going to implode.
But still they don't take it as seriously as "oh my god you have high bloodpressure!".

Annie, what other kind is there? I've heard there are different kinds of steroids, but I only used one (pink ones, just prednisolone).

Anacrusis, I have missed you! I do hope you're okay.

Hope you're all okay. I just got food through tubes in my nose because I can't swallow much more. That's ******! But my lungfunction is what is the real pain in the ***, I hate not being able to breath properly. Anywho, I still don't need real oxygen (yet) so I'll postpone it until I really have to.