Hi motorhead,
Yes indeed, MG is a very peculiar illness. When mine started, almost all "volontary" muscles were affected except the leg and thoracic ones. After about 6 months of treatment (Mestinon, high dose Pred and Cellcept), I recovered arm strength, neck strength was back after only 2 or 3 months, and strangely, my legs got weak and it stays like that -max one hour walk on flat ground, no mention for stair climbing!- for about one year although I could swim for half an hour without any problem.
Presently (about 2 years from the start) I got my leg about normal to the point that I'm planning some hiking mid August…
Cataract: I'm in the same condition as you (one eye done before MG and the other, after) but I have now glaucoma treated with eye-drops mornings and evenings, so watch out for that!
Maurice.

A quick welcome to the group, we all start good & wear out fast !
Mary

so it seems. the prob for me is the inability to predict how and at what rate. i think part of my difficulty right now is i just hit the peak dosage on steroids. 60mg first thing in the morning. also on heavy mestinon, 90 mg/4 hrs., lots of stuff to adjust to. as i said in my earlier post though, anything beats being fully symptomatic. i'll make sure i hit my opthamologist regularly. he checks me for glauc. every time. i can truly enjoy my new eyes now that they're fully open.

Hello and WELCOME to the BEST MG site on the NET! You are going to meet some amazing people on this site! I promise you that!

I have a really hard time with my MG, simply b/c I never know what kind of day I'm going to have until I wake. That is the hardest part.

Do you have an enormous appetite now that you are @ 60 mgs of pred? Are you having mood swings? I'm at 60/40 alternate days for the time being, though I was down to 15 @ one point - it was FABULOUS!

Can't wait to hear from you~!

~Erin

hi erin,

appetite yes. pets are nervous. i was on pred when i was young for a kidney problem so i know pretty much what to expect. i've been less than my usual cheerful self lately and a bit short on patience, but knowing this i can try to mitigate it. my face is swelling nicely. i grew my beard out so i less resemble richard nixon. (please don't be frightened of the photo in my profile) the most frustrating aspect of the disease for me is that i am/was an extremely active guy for 53. i usually work 12-14 hr. days, 6 days a week. i can see i'll be adjusting that!!! mg is living proof that that which does not kill us does not necessarily make us stronger. well, perhaps mentally or spiritually. at least my sense of humor remains intact.

Motorthead, the maximum dosage for Pred is 1 mg/day/kg of weight, I went up to 75 mg/d for 75 kg.
You are also on Mestinon but do you take immunosuppressors like Cellcept or Imuran? These are usually necessary to be able to taper off Pred later on since one cannot go on at those doses and as they are pretty slow acting, they have to be taken early at the same time as Pred.
Maurice.

Welcome to the group. Its a good place to ask questions and learn from other peoples experiences.

The frustrating thing about MG is you can't predict it, it has a nasty habit of bitting you on the bum if you try to!

I can wake up in the morning feeling wonderful able to move around etc and then a few hours later have bilateral or unilateral ptosis and breathing problems. I think the best thing to remember is if it starts acting up STOP, and rest. You have to listen to your body. And Im a fine one to talk!LOL

I hope you are coping with the meds ok.

Love
Rach

pretty well thanks. i weigh around 240 lbs. so the dosage is pretty spot on. bear in mind, this started at 5mg and increased at 5mg/5 days to a max of 60 mg.. prednisone IS an immunosupressant. that is it's role in mg therapy according to my neuro. we've been over the pros and cons of steroids and the benefits for now, outweigh the risks. it won't be fun or easy but i'm told there are SOME long term gains to be had and less chance of crisis down the road. my neuro said his biggest concern was crisis prevention for the first year after dx. he has lots of experience treating mg so i trust him implicitly.

Motorhead, with your weight, 240 lbs, which is about 100 kg, the max of Pred would be 100 mg/d. I don't say you should take 100 mg, but if needed, your neuro could prescribe you more than 60 mg.
About immunosuppressors, sure, Pred is one and fast acting and efficient but the side effects are such that it is highly advisable to taper it as soon as possible and replace it by an other immunosuppressor which unfortunately takes several months to kick in…That's why they are started in advance of the taper.
Maurice.

Hi, MH. Do you have a more informal name?

Good advice, Maurice.

This isn't really "alternative"medicine but I guess it's more like "foreign" medicine to some docs. Did your neuro say to take calcium and vitamin D while on Pred, to stay away from sodium and to add in omega 3's?

The problem, as you well know, with MG is that it is so damn unpredictable. Even when I think I'll be okay doing something, I can get much worse. It's the worse part of this disease, other than the not being able to do what I want to.

Do you work outside on your truck and doing contracting? The heat will make things worse.

I wish they did have more meds with fewer side effects. I have hope that they will get those drugs to the market. The problem was that the development of Monarsen changed hands midstream and so they have had catchup work to do.

Annie