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

yeah we covered all the dos and don'ts of steroids. truthfully, i don't think i'd want to go much stronger unless i really had to. it's been a little rough since i hit the max on sun.. the heat has definitely been a factor, hi90's-low100's here in sunny so. cal.. i've noticed a peak weak time around 3-4 p.m. and am scheduling that time slot for nap/rest. evenings have been the most productive. mornings suck. too many meds to get down and acclimate to. midday in summer is mainly for indoor work. way too hot. small jobs are ok, prolonged exposure is NOT.
next neuro appt. is the 25th, unless i have a major problem. i'll know more about the long term therapy plan then. he was waiting to see how i tolerated the steroids and that couldn't be rushed.
in the big picture i feel all is going relatively well. my symptoms are well controlled with the mestinon. i'm alert for changes for the worse and haven't noticed any. i do agree 100%, the unprdictability is difficult to deal with. i've resigned myself to the fact that i have to take as much down time as my body requires. the only drastic change i've made is not scheduling any early morning work or appointments. thanks for the input. i do plan on discussing alternatives to steroids with my neuro. it may end up being a money thing also. i am paying real money for all this. the only real biggy there so far was the blood work, $700. i will need a CAT scan in the not too distant future to rule out thymoma. that will probably run $700-800.

hey guys,
just thought of a question. mestinon tolerance? how fast does it build up? right now i'm well maintained on 90mg/4 hrs.. less brings some symptoms. by 5 hrs. it wears off. this is constant for now. how soon will i build a tolerance to the drug? been taking apporimately 3 mos.. i understand the steroids diminish the effect also. these are things i've read. i prefer to get the info from those with real life experience.

a little post script here on steroid alternatives. cellcept will never be an option due to cost. JFC! over $1K for 30 days. imuran is a possibility although it seems to have it's own drawbacks. food for discussion with my doc. options are always good. i don't hold out any massive hope of new drugs becoming available any time soon. with the govt. meddling with healthcare, the big players are going to be reluctant to invest. with the rarity of mg, we're kind of the red-headed stepchild of diseases. i'm afraid they will see no profit in development. hopefully i'm wrong there.

Hi Motorhead,

What do you mean by mestinon tolerance?? As far as I'm aware your body doesn't build up a tolerance, in fact you can overdose on it, the symptoms are basically the same as if you don't take enough. I started out on 4 x 60mg daily and a timespan at night, now almost 7 years later I'm down to 2 x 60mg daily.

Apparently cellcept has just had a generic brand bought out (I'm in Australia and havn't heard of it yet, but will ask my neuro about it on Monday ie if it is in Australia yet) which may make it more affordable.
I really do feel for every one of you in America regarding medical costs. The most a prescription costs me is $5.30, because I'm on a disabilily pension. Iam very very thankful for this and the fact that a hospital visit won't put me in debt.

I'm sure some of the more knowledgable members will be along shortly to answer your questions more fully.

take care
Kate