Annie, Steven had bloood test in the hospital. I cant be sure but I think his liver and blood count was addressed befor the Imran. I have been concerned with the twitching pain in his hands and face, and the fluttering in his eyes. I feel confident on his care so far. I am carefully monitoring his actions and I am taking your advice very seriously. I wanted to ask you as well what you take for meds?

I can only take Mestinon, unless I have another crisis. The other drugs are contraindicated for a lot of reasons. I have to manage with rest and common sense, plus my afternoon cup of coffee. I've had steroids, as have my friends, Dad, lupus patients I've known, etc. And I am NOT confident about the Pred care he his having.

Twitching in his face/hands could be a number of things, such as an adrenal crisis, electrolyte imbalance, B12 deficiency, etc. It might also be that the Imuran and steroids have kicked in and he might be overdosing on Mestinon. Is it still there between doses of Mestinon?

I would highly recommend that you go see an internist/primary doctor to discuss all of this!!!

Annie

Yes Annie e is on 40mg pred every other day,60mg of mestinon everyday and 50mg of imuran everyday. Plus he takes this anti-diarirrea med as well. He is a stubborn man and feels he is doing ok. The only thing he complains bout is the twitching and rapid eye movements. We are seeing both neuro and pcp Jan 5th and 6th. He doesnt seem distressed, but he might be covering it up,. Thank You for all of your responses

http://emedicine.medscape.com/article/765753-overview

http://www.nytimes.com/health/guides.../overview.html

http://www.prednisonefacts.com/predn...awal-symptoms/

http://www.nadf.us/adrenal-diseases/...insufficiency/

http://www.medsafe.govt.nz/profs/dat...dnisonetab.pdf

1. Consult with an endocrinologist.

2. Wear a medical alert tag and carry card to alert medical professionals.

3. Please stop the damage being done to your body due to the zero day putting you into a severe withdrawal by talking to a doctor right away, Steven!

With respect,
Annie

Hi Trish. I don't post much, but reading about Steven's Prednisone taper I feel the need. Annie is correct, Steven's pred taper is at best INSANE. I was diagnosed 15-16 years ago and in that time I've been on and off Prednisone many times. Although it has been said that we are all different and react differently to medications, it took me about a year to come off 100mg. Looking at your prior posts, Steven was on 80mg two months ago and is now on 40mg EOD (every other day). Way too fast! I've had different neurologists since my diagnosis and no one ever went that fast. I understand the need to get off pred due to the long-term risks (I'm dealing with a few), but not to the detriment his current health.

I also take Imuran (200mg) and mestinon (60mg) 2-3 times a day. I'm currently on 25mg of prednisone, up from 5mg a year ago. Current neuro said that last year's record low temperatures were the cause of my current flair, so it's not aways the heat.

I can't speak to the twitching or eye pain. I can relate to the aggressive moods. I told friends and family that it may be a symptom of high dose pred, they didn't tell me how bad I was until I was at a lower dose and acting more like "myself".

Hope this helps,
Jim

Hi Trish, I am new here myself but I also feel that the taper is way to fast. I am on a relatively low dose of preds 40mg and 150mg of azathioprine also 60 mg Mestinon x4 per day. Would like to add that when starting azathioprine had to have a blood test first and then for the first month a weekly blood test to monitor my reaction to it. Also azathioprine can take months to kick in and my Neurologist wont start to taper the prednisolone until he is sure that azathioprine has kicked in.

Regards John

Thank You Jim Since u have had this desease so long you know the aggressiveness and it can be frustrating. He has only been diagnosed 3months now and I dont think he has fully accepted his illness. He is currently out of work and just sits and watches tv all day long. I know he gets tired and takes lots of naps. He says he is not depressed, and that he has come to terms with it but I dont believe he has.

Are you working? and if so were you ever out of work? He has the attitude he will never work again. He is only 55. Thanks for posting.

First of all, John is correct. I had my blood tested before starting Imuran (azathioprine), basically to see if liver and kidneys are OK. I'd never heard of the TPMT test that Annie mentions, but trust her, she knows her stuff. Imuran takes several months to kick in, somewhere between 3-6 months, but it can take longer. It's at this point that the pred is tapered off.

Here's a brief history of me: I was quickly diagnosed at age 37. Annie may remember me as JimInTx when this site was called BrainTalk. My internist started me on Mestinon TimeSpan (timed release and no longer available) and sent me off to his brother the neurologist. I had all kinds of tests done to confirm the diagnosis. A subsequent CT scan showed a hyperplastic thymus with thymoma. I sport a 9" transternal scar from that episode. If I recall, Imuran and Prednisone were soon started. Prednisone was increased to 100mg due to a stressful job aggravating my MG. I was also put on low dose Effexor ER to help with stress (now contraindicated for MG patients). Two promotions and a whole bunch pills later the financial crash happened. Lost my job. I've been on and off antidepressants. I've moved back to Michigan and now live with my 86 y/o mother, managing the house and yard. I've looked for work here, but soon after losing my job I lost sight in my right eye. Not MG related, but being immunosupressed didn't help matters. Believe me, I want to work, but the MG flairs and eyesight limit my prospects.

I'm now 53, similar in age and out of work. To answer your questions I was diagnosed at 37 and was working and continued to work with the exception of a few medical leaves for surgeries and other medical procedures. Now at 25mg of pred I'm not really aggressive, but I do have a short temper. Depression? Hell yes. I came to grips with the MG issue 15 years ago, loss of eyesight about 7 years ago and now coming to grips with ostioarthritis. My MG isn't as bad a most here. I mow the lawn (self propelled push mower), shovel snow, clean out gutters, etc. I was going to volunteer at the local MDA office until they moved across town. I'm considering the local humane society when I'm a bit more stable. I'm hoping that will lead to new friendships, better self-esteem and possibly a job.

Let me know if I can answer any other questions you may have.
Jim

Your post was was sad and I truly am learning a lot on this site. I cannot believe you were 37 when this happened. How did u lose your site? And I gather that you are depressed if you are on Effexor. Where you in the stock market? That was a horrid time. I lost lots.

Steven cannot work he works with thousands of dollars of equipment for the goverment and his hands sometimes loses their grip and he could drop things. I am home on SS disibility with a severe back condition. I had a fusion in 2010 and it failed so I have not been back to work. I am here coping with my illness and trying to get him motivated. I know this is new to him but I hope things change and we can get our life back.

I didn't mean for my post to be sad, but informative regarding work. Sure, it sucked getting diagnosed at 37, but I was at least diagnosed very quickly in respect to others here. Yes, Effexor is an antidepressant. If he should need an antidepressant I'd start with celexia. Generic is cheap and there are few side effects. I don't take any antidepressants now. (Check out www.crazymeds.us). If Steven is having trouble swallowing he might try turning his head to either side and then try swallowing.

I lost my right eyesight due to a massive infection. I had another infection along with a bout of Shingles that affected my left hand (neuropathy). Yup, you guessed it - I'm left-handed. Fortunately I worked retail on the corporate side so I basically sat on my butt in front of a computer. I ran into trouble when I had to travel for business. Nothing in particular, just the hassle of it all.

I've no advice for the issue regarding his grip and work. Have you registered with MDA (mdausa.org)? They publish a magazine called Quest. Besides informative articles, there are ads for all kinds items to help around the house. I do suggest plastic tumblers at home for drinking, but keep the red wine away from the white carpet. I have managed to keep my sense of humor throughout the years. I recall in recovery from my thymectomy that I asked for a beer after being told I had to pee before being released to floor care or risk being catheterized (I didn't get either). For a good laugh, remind me to tell you the story about my best friend and I taking out my IV.

Steven will improve with good care. Sounds like you are a part of that. Just be sure to take care of yourself too.
Jim