Christo,
I've not heard of this treatment but your symptoms do sound severe and unremitting. I'm sorry the other treatments have not worked for you. What other treatments have you tried? IVIG or Plasmapheresis? Any immunosuppressants like cellcept or imuran? How long have you been having symptoms? I do hope this treatment leads to some improvement for you. Please keep us updated on how you are doing. One thing you will find here is support.
Cathi

Christo,

I also have never heard of Cortisone iv treatment. I don't know anything about the medical system in Finland and it must be frightening not to speak Finnish. MG is very frightening at times, even when you speak the language. Are you from the US? I'm sure not being able to sleep makes your symptoms even worse. Sorry I don't have any advise, but I am thinking of you!

Judith

Christo, I also have not heard of that treatment. I know when I have trouble sleeping my MG gets much worse the next day. Have you considered asking your doctor for something to help you sleep. Sleep aids such as ambien or anxiety reducers like xanax do not seem to flare my symptoms and help me get the sleep I need to get the most out of my day. I hope you find treatment that works for you!

"Cortisone may also be used to deliberately suppress immune response in persons with autoimmune diseases or following an organ transplant to prevent transplant rejection. "

http://en.wikipedia.org/wiki/Cortisone

Cortisone is a glucocorticoid.

Please let us know how it turns out. Seeing that Prednisone did not work for you though, I would be surprised if this did much better(for what that is worth). I would think IVIG(as mentioned) and Cellcept/Imuran would be a better way, but this is interesting as I don't know anyone that has tried this and have not heard of it being used for MG.

I wish you better days ahead Christo. Hang in there!

We are here for you,

Best wishes,

TJ

What are all of your symptoms? Is it Generalized MG? Also how long has it been since your thymectomy? Maybe you need more time. Why did you have one? Was there a problem with your thymus or just as recommended? You're a male and 44, and I am 38 and thymectomy is something I can pursue, but have not given any serious consideration due to my research and what people have shown me here as well.

Either way, you and all of us seem to want to get better and that is the way it should be...

Best wishes for peace,

TJ

Thanks to all of you for your comments and support.
Currently I am sitting with general MG symptoms, and double vision. The 3 day IV Cortisone treatment that I have just completed has definitely helped with the droopy eye, and I am seeing an improvement in the double vision, I will monitor and update my status over the next few days.
Apparently this treatment has been used on a number of MG patients here in Finland and with quite a large success rate, that is why I was willing to give it ago.
Regards,
Christo

So glad to hear you are having some good results and decreased symptoms. Please do keep us updated on how you're doing.
Cathi

TJ wrote: "Cortisone may also be used to deliberately suppress immune response in persons with autoimmune diseases or following an organ transplant to prevent transplant rejection. "

http://en.wikipedia.org/wiki/Corti...

Cortisone is a glucocorticoid.

Please let us know how it turns out. Seeing that Prednisone did not work for you though, I would be surprised if this did much better(for what that is worth). I would think IVIG(as mentioned) and Cellcept/Imuran would be a better way, but this is interesting as I don't know anyone that has tried this and have not heard of it being used for MG."

TJ wrote: "Cortisone may also be used to deliberately suppress immune response in persons with autoimmune diseases or following an organ transplant to prevent transplant rejection. "

http://en.wikipedia.org/wiki/Corti...

Cortisone is a glucocorticoid.

Please let us know how it turns out. Seeing that Prednisone did not work for you though, I would be surprised if this did much better(for what that is worth). I would think IVIG(as mentioned) and Cellcept/Imuran would be a better way, but this is interesting as I don't know anyone that has tried this and have not heard of it being used for MG."

The IV version of prednisone is a corticosteroid, as Christo mentioned and is used for MG all the time for MG patients in crisis. IVIG and Imuran doesn't combine to mediate crisis the way a corticosteroid injection will. while IVIG may help in the near term, when someone is in crisis, they need help NOW.

Christo - I'm so sorry you are suffering the way you are. You are doing everything you can to get rid of your symptoms and you will succeed. Unfortunately, it may take a little while. Try visualizing that you are in a better space. Take it easy. Do whatever you can to reduce anxiety. and, most of all, know that you are going to be well again. We're all with you!

Curt

Hi Christo

I am happy to hear that you seem to be showing some response to the IV cortisone. I was very interested to read your post. I thought I would just caution everyone that sudden high dose cortisone treatment can in fact worsen unstable MG in certain cases. Not all but certainly it is well documented to happen in a percentage of MG patients. Since you seem to have got better since the treatment you luckily obviously aren't one of these but thought I'd just bring it up because there might be others like me who are.My Neuro who is an MG expert always increases and decreases the drug slowly. She would for example increase the dose by no more than 10mg every 2 days and would decrease it by about 5mg every 2 weeks or only monthly. My dramatic crisis after starting high dose steroids for an asthma attack was one of the features that actually assisted in my diagnosis. That having been said I am really delighted that you are seeing a good result! Best of luck!
Ange

Ange -

Your points are well taken. The treatment Christo received was the same as I was given three years ago when I went into a coma from respiratory failure. I have never - thankfully - suffered any ill effects from either steroids or imunosuppressants and the high dose turned me around within days. I went from not being able to walk, dress or breathe to being virtually asymptomatic within a few days because of the cortisone.

Before I went into respiratory arrest, my neuro had me on a smallish - say ~30mg - dose and I suffered for two years with myasthenic symptoms. I was extremely disturbed by this episode - and to have spent a week in a coma - only to learn after the fact that I could have been spared the coma - and two years of suffering - if only I had been given mega-doses of steroids early on.

YMMV,
Curt

Hey Curt

I'm delighted that the steroids have won you back your life and I'm sure that there are others who will respond to the treatment too. I merely wanted to caution people that in about 50 percent of myasthenics there will be sudden deterioration following sudden high dose prednisone. The study I looked at showed that in fact 15% of the 50 actually went into crisis requiring ventilation. I suffer from severe asthma as well as severe MG and it's a real problem because we cannot treat the asthma with the sudden high dose steroids for that very reason. If I hadn't already had such a dramatic reaction to the sudden high dose I would probably try it myself. Just want to warn people that it involves a risk though and is perhaps something to discuss with your neuro. One study I saw last night actually suggested a series of PE's prior to beginning high dose steroids to avoid this deterioration and that's maybe something for anyone who tries this approach to consider.

Better days to everyone!
Ange