Don't you just want to smack peole when they ask "What happened to you" or "You used to be so thin"? I really want to whop them! I know that sounds awful, but give me a break! I would never walk up to ANYONE and say that!

My gram had her heart transplant way back in 87 and she was on MASSIVE steroids - poor thing! She was TINY - you know the whole 18 in waist thing - and the first time I saw her after that I was shocked! I mean she was beautiful, but her little face was so round and full! It just made me so sad! She eventually went back to normal, but people would stare @ her too and it just made me flip out! THese people had no idea what she'd been through, yet they'd stare @ her like she was blind or something - - - -maybe I WILL get that shirt! Rude - maybe - important - definitely!!!!

Do you think that would be too tacky?

How are you doing?

Erin

You and your t-shirts... you crack me up! I was started at 60mgs too. I'm stuck now at 40 mg every second day and my new neuro says he doesn't want me to try to reduce any further for the next 3 months at least. He was a bit upset that I'm still symptomatic even on all my medications, but I've never been asymptomatic since my diagnosis! Things are good though - still enjoying my job and busy getting ready for the holidays. I still haven't finished my Christmas cards and they were supposed to be mailed two weeks ago! Ah well - they'll get there for the new year.

Hope everyone is keeping well! Take care of yourselves at this busy and potentially stressful time.
~Kathy

I wonder if that is the norm.....my neuro started me @ 10 mgs cuz' he said that I was too weak to take any more @ that time, however it was doubled when I was in the ICU - that way they could monitor me....Apparently mestinon and Prednisone can have some pretty awful affects when they are mixed!!!


Yeah, I enjoy my t-shirts!

How do you feel @ 40 mgs every other day? I'd love to be able to go to every other day - sadly, it's not to be for a while!!!

What are your symptoms? You've never had a period of remission? How do you handle that? Your family?

Happy holidays!

ERin

The nurse just left my home to start getting everything set up for IVIG. 5 days in a row, then 1 day a week. My doctor gave me an emergency script for ativan, I know to be very careful with it, but at least it is making life bareable until I can get on an antidepressant.

I had a little extra money left over and had a woman come over to help clean and she did an amazing job! God lover her!

The clouds are very slowly starting to drift away.

Thank you all so much. I was very reluctant for many years to join any kind of a health chat board. Almost all of them have people that just kind of complain and like to comiserate, which makes me feel worse actually. I'm so very glad I was picky and waited to join this one. You guys are great - I'm here to stay!

What great news!!!!!!! See, it's going to be alright!!!!!

There will be times when having MG can be a bit unbearable, and that's when you can rely on everyone here! They really are the best!!!!!

I bet your IV IG will make all the difference! It may take a few days to take effect, but you'll feel like climbing Mt. Everest when it's done!!!!

I am so happy the lady cleaned your house too! I know I cannot focus when my home is a mess! I have a touch of OCD and it really puts me in a foul mood when my house is chaos!!!!!

I am so happy you were approved for the IV IG - they put the port in you? I'm thinking about going that route......tell me how it all worked out for you!!!

Happy Holidays!!!!
Erin

They started me too at 10 mg/d of Pred, then after 5 days, period during which the situation got worse (but no ICU…), they increased + 5 mg every two days and I went home after about 20 days at 45 mg/d. Later Pred was increased to 75 mg (1 mg per kg of weight) and the taper was started several months ago, I' m now at 17 mg/d, January 1st at 15 til my next apointment on Jan 22nd.
Maurice.

Hey Maurice~

Did the roids make you weaker? My neuro had me on mestinon, but wouldn't put me on the roids until I was safely in the hospital, cuz' he told me that they would make me weaker (at that point I was in denial and told him I could stand to be weaker - he disagreed)

Then when I was in the hospital, he increased my roids by 10 mgs daily (I had to take the liquid Prednisone - it was the worst thing I have ever tasted - I cried when I choked it down)............until I was up to 80 mgs - boy did I blow up!!!! It was wild!!!!

Your family is coming up for the holidays, right? That will be a blast!!!!!!
We are going to have a quiet xmas this year - only a few friends and family members, so no stress!!!! Amen!!!!

Have a great time with your family!!!!!!

Is it snowing there? I keep hoping for a white xmas!!!

Erin

Erin: I was in hospital when they started my pred - they wanted to make sure I didn't crash at all, but I was fine. I didn't get any better though - it took a good few weeks before I built back up my strength. I feel ok at 40mg, not great though - it's such a fine balance. And I can definitely feel a difference between my steriod days and non-steriod days. My old neurologist said she wanted the alternate day therapy so I would keep my thyroid active in the meantime.

You asked about my symptoms - I still have minor ptosis when I get tired or read a lot and some double vision. My biggest problem is arm and leg weakness - I still have to be very careful on stairs they seem to realy fatigue my muscles and given that I'm carrying around all this extra weight doesn't make things any easier! I'm okay as long as I take my Mestinon every 3 hours - like clockwork!!! It's a NEED, not an option. I have some days when I feel a bit better than others, but usually I'm counting down the minutes until my next dose! I've fallen down too many flights of stairs to want that to happen again. Because of my weakness I've "lost" one of the muscles in my legs (just above the ankle, below the shin on the front of my leg). I also suspect a similar problem with a muscle around my knees because that seems to be the weakest area of my legs. It just means I have to be careful when stepping.

In terms of how my family feels... I don't really know! My husband is just very supportive and helps when he can. I still suspect that he thinks some of it is "all in my head" but he's also seen enough to know that there is something not quite right. It's just the variability that confuses him. I think my Mom is scared, especially being so far away from one another. She only sees me a couple of times a year so she worries a lot! My Dad just expects me to get on with things and that is pretty well what I do! My MG might slow me down a bit sometimes, but it's not going to stop me! And my mother-in-law just wants me to have babies (sadly not going to happen while I'm on the azathioprine) so she doesn't quite get it either! My workmates know I have some weird condition but I don't like to talk about it too much so I don't sound whiney.

How are you feeling? Ready for the holidays?

Miachris: I'm jealous of your cleaner. Lately I've felt well enough to clean, but can't get motivated! I try to stay on top of everything, but everytime i turn around i find something else that's messy!! My husband thinks I'm a bit crazy with cleaning too - maybe not OCD but not far off! He just never seems to notice any mess... typical late-20s male I suppose (poor guy - he's getting a rough deal in this post... he really is fantastic).

And see! By this massive post I am again procrastinating from cleaning!! Ah well, here I go. Take care everyone!!
~Kathy

Okay, just one more quick note (I'm sorry, I can't believe how long that last post was!).

Maurice, What increments of pred do you get? I can only get 25 and 5 mg tablets so I wouldn't be able to reduce by such small amounts.

Talk to you soon!

Erin,
Yes, the first 5 or 6 days after they put me under steroids at the hospital were rather difficult: generalized increased weakness,extreme difficulties for chewing and swallowing, my myasthenic score (see my previous post on the subject) went down from 40 to 30…Ten seconds for my extended arms or for the legs test were the maximum! But I never experienced breathing problems (maybe due to my previous rather frequent swimming practice?) The pred increase was also more cautious (+5 mg every 2 days…).
We had a lot of snow 3 days ago and they forecast a very cold period between Xmas and New Year Eve…the canadians won't be disoriented! We have about completed our shopping, the menu is almost decided, we will be 14 persons , including the grand children, the last time we were all together goes back to the summer of 2003, but as we have lived 5 years in central africa and two years in US,(besides France and Belgium) we can't complain about our children's way of living and moving around, we probably pass them the virus…!
We count the days, they arrive on December 25 and the big party is on December 27.
Scotskat,
I have here steroids by 20, 5 and 1 mg, the first two pills may be broken in two parts, so the dosage may be finely adjusted.
Merry Xmas and my best wishes for 2009 to all of tou,
Maurice.