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-   -   New to site new to MG and scared (https://www.neurotalk.org/myasthenia-gravis/45167-site-mg-scared.html)

nancylee 05-12-2008 05:33 PM

Quote:

Originally Posted by GodDreamer2007 (Post 276129)
Hi Nancy Lee,
I'm curious about the Prednisone you take. Does your neuro have ou to do a gradual tapering after you've been on it for over a week? After being on Prednisone for over 7 days, ones adrenal glands shut down, and have to be carefully and slowly awakened. Otherwise it can be very dangerous.
I've been on Prednisone since 2004, and have been trying to get off for well over a year now. It has to go slow, really slow, other wise a person can die. I didn't know if you knew this, and sometimes dr's forget to explain this to their patients. Not sure why, as it's very important.
love Lizzie

Lizzie,
I am on a low dose & there has been no mention of tapering off or of adrenal glands. But, I am going to see him on Wed. & I will be sure to ask about this-Thanks for the info. I really like my neuro, but it is scary to think that he may have forgotten to explain the risks!!! Thanks!!!
Nancy Lee

rumpled 05-13-2008 11:43 AM

For sure, neurologists DO not understand the adrenal gland. If you have been on steroids, you do need to taper down or you can die from adrenal crisis. Even when I was in the hospital, and I am a steroid dependent person due to having my adrenals removed due to Cushing's disease and needed steroids to LIVE and the neuro residents would not give me steroids and almost killed me that way. They simply do not understand how steroids really work - they think they are anti-inflammitory or magic but fail to see what they really do to the body long term which can be damaging to bones, muscle and eyes and shuts down the adrenal glands.

You have to taper off to make sure your adrenal glands wake up to take over their essential function. If you are nauseus, achy, feverish, low blood pressure and feel horrible, you may be in trouble. Look up adrenal crisis to make sure that you are not having any issues. Get medical attention and tell them you were taking steroids.

Maxwell'sMom 05-13-2008 07:31 PM

My first Neuro put me on Prednisone and never explained the long term effects. The neuro I have now is very good, and is vey informed.
Please do speak to your Neuro about it. Sometimes they get so busy and forget to explain these things. Plus there are times when I wonder if because they know all this stuff inside and out that some forget that the Patient may never have heard of Prednisone before..such was my case.
never ever just quit Prednisone, you really could lose your life.
You can even look it up at Prednisone.com I believe it is. Or google it.
best of wishes
Love Lizzie

Byteryder 05-25-2008 10:49 AM

Here is a good site for looking up meds....

I cant post a clickable link so look up..

Curious 05-25-2008 10:57 AM

Quote:

Originally Posted by Byteryder (Post 286565)
Here is a good site for looking up meds....

I cant post a clickable link so look up..

right at the top of the page here on NeuroTalk, right side above where it says welcome, is a link called Drugs. makes it easy to look up meds and many supplements.

(also checkout the other llinks there. )

Baldie 06-30-2008 03:42 PM

response to myasthenia gravis concern
 
Josie: I just logged on and read your note. I, too, was recently diagnosed with occular myasthenia gravis. I, also, was very frightened. After several dose changes, I am taking mestinon and prednisone (a steriod) and my vision returned to normal. Now at the stage of trying to maintain no symptoms with as little drugs as possible. Stress is your biggest enemy- try to minimize stress in your life (easier said than done!). Also, rest is of great benefit for this disease. You may perspire more than usual from the Mestinon but there are really very few side effects of this drug. Good Doctors who really understand this illness are hard to find-- try to local an expert in your area. (e.i. major health centers in larger cities). Your action plan will be try to prevent more serious symptoms; there are several courses of action. Don't be scared; you''ll be OK. Most people (over 90%) live pretty normal lives. Believe me--I have read a ton of info on the subject in the last 2 months!
Respond if you' like. GARY (by the way, I'm 61 yrs old and age does play a role in this.)





Quote:

Originally Posted by Josie S (Post 274727)
I don't really understand what is happening to my body. I have just been diagnosed (after many years) with Myasthenia Gravis. They just started me on Mestinon. Can anyone out there tell me what to expect. I am feeling the fear of it all right now and am very depressed!


erinhermes 07-10-2008 06:39 PM

I have also recently been diagnosed with MG
 
Quote:

Originally Posted by Josie S (Post 274727)
I don't really understand what is happening to my body. I have just been diagnosed (after many years) with Myasthenia Gravis. They just started me on Mestinon. Can anyone out there tell me what to expect. I am feeling the fear of it all right now and am very depressed!


I was also recently diagnosed with MG after about 1 year. It was terrifying at first, but as long as you have a good doctor you'll be fine. I've had several IV IG treatments and they were the best! I also recently underwent a thymectomy and hope to be in remission soon. What tests have your doctor performed on you? Mestinon was a life saver in my case! I finally had energy - it was the best! It may upset your stomach a little bit, but trust me it is well worth it! I was finally able to swallow, walk and see for the first time in a while. I am also on steroids (60mg per day) but will be reduced to 50 mg tomorrow. The steroids are what really made a difference in my life. Please take care of yourself and know that you are not alone.:)


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