intro
 

hi everyone. noob to this forum and to mg. i was diagnosed around 3 mos. ago. confirmed by antibody blood tests. also nerve condutivity study (ouch!) had misdiagnosed ptosis off and on for 2 years previously, finally new symptoms presented during a particularly nasty bought of the flu. always good to have answers, even if they aren't the ones we want.
i'm curious about new treatments and in particular, an alternative to steroids developed in israel. see my thread on same. i am not interested in alternative medicine, prayer or voodoo.

Hi and welcome to the forum.
Always good to see a newby around, look forward to seeing you around the board more

Kate

thx. love your sig BTW.

Hello and welcome, no voodoo here that I am aware of..LOL. I have had MG for over 18 years but as of today I take no medication for it {to many allergies to meds} so I just control my MG with rest and planning.

i wish that were the case for me. it had reached the point where i could barely eat normally. mestinon has been a lifesaver for me.

thanks. I love reading and dogs so thought it was appropriate!!

today was difficult. tried to work on my truck. seems to be one of my most difficult tasks. the positions and such tire me. truly sux because i do lots of mechanical work. did it professionally for 14 years. the really odd thing is that my regular work as a contractor seems much more physically demanding yet tires me much less. i have difficulty lifting over my head but am able to climb ladders and handle heavy tools with little difficulty. when i spend 15-20 min. leaning over a motor i feel like i need to lay down. my neck gets especially sore looking down. like my head weighs a ton. wierd???

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.

Hi Motorhead!
 

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

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.:mad:

Do you have an enormous appetite now that you are @ 60 mgs of pred? :D 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!:D

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.

Hi Motorhead
 

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

i had read one place that mestinon built up a tolerance after extended use. i think it was on the website for monarsen, so there may be a vested interest in that. that was my question though, will i have to increase my mestinon over time? i know about the o.d. potential. as i say, i'm at as close to the perfect level as can be right now.

Hi Motor Head,

Welcome to the group! I have read and heard that as well. Some people after taking a certain strength for a length of time, may have to increase it to get the same effect. I don't hear that happening here too often. Take care.;)

Hugs,
Pat

thx. i was curious. i only remember reading that in one place. those i've talked to seemed to indicate otherwise. anyway, looks like i'll have a better day today. i feel much better than sun. or yesterday. i actually feel like doing something constructive/productive. i was raised with a traditional work ethic and i give myself a lot of guilt when i procrastinate, even with good reason. i'll have to be adjusting that.

whoo hoo! good day today. felt decent for a change. got some work done. no fatigue until well after 5 p.m.. not too much discomfort from the meds. it may be a while until i have a great day but i'll be more than happy to settle for a decent one. i hope someone else had one as well.

Hi Motor head
 

Thats brilliant news! Just do try and take it a bit easy for a while so that you can gauge how you are properly. Sometimes you can be fine on the day and pay for it the next.

Take care

Love
Rach x

hey!
today was not awful either. not as good as yesterday but it was much hotter. yesterday we got a small break in temp.. today it was the 8th circle of hell. i was outside most of the day and did well. mostly driving and errands but i survived all day in the heat. came home, rested immediately and ate. i think my helper suffered more from the heat, he doesn't tolerate heat as well as i do. i don't tolerate cold. here's hoping someone else had a normal day.

Hi Motorhead!
 

:DHi there! I am so glad to hear you are feeling better! What wonderful news!:D

It is so funny to hear that you don't tolerate cold - I just love it! When it gets down to 50 or so here, I love it! I walk around in little tee's all day - no jacket @ all and everyone looks @ me like I'm nuts! Oh well!
Heat is an entirely different matter - my face balloons to twice it's size and my eyes are like little slits in my head - hate that!

I hope this post finds you strong and HAPPY!

Take care!:D
Erin

well today mostly sucked! too hot! not real bad but nothing much got done. not a total waste, got everthing done inside. just can't deal with 100+ deg.. just putting the garbage cans out was an ordeal.

I hear Ya! Yesterday I got the garbage to the curb, and watered three plants that were threatening to give up in the heat. They got their water and I went back inside for the rest of the day!! I really hate the heat!
Sue

well today is supposed to be cooler. hopefully less suckage. i've taken to heart what everyone here told me about the effects of hot weather. it's brutal. i noticed the mestinon side effects are worse when it's hot also. here in so. cal. the coastal areas are quite plesant, that's the ca weather you hear about. i'm in an inland valley where 90-100 is the norm for summer. i suppose it could be worse, i lived in phoenix back in 77-78.

Hey MH,

I'm glad to hear you've had a few good days. It's good you are seeing what the heat can do to you. With this disease being so unpredictable, a few days out in the heat can knock you down on the coach for a week. That's not to scare you, just that I've been there more than once in 11 years. Rest, fluids and staying cool is key. I'm having a pretty good day myself! Take care.;)

Hugs,
Pat

no, not scared at all. i appreciate the input from those more experienced than myself. precisely why i've been moving with caution during this heat. you good folks have probably saved me much pain. it is a bit of a PITA with respect to work. the world doesn't stand still and all that but nothing would be accomplished making myself sicker either. since i'm relatively new to this i'm pretty wary for changes in how i feel. i've developed a routine of sorts and now have somewhat of a standard by which to judge my condition. at this point, any warning signs need to be addressed.

I'm convinced that it isn't just the heat of one day - - but day in day out wears on me. I went to grocery store this morning for a few things - - and was totally wiped by the time I got home. I took a pill before I went, but needed another as soon as I got back! Never had this happen before - - and would like it not to happen again!!

Like an old tv show said....'let's be careful out there' Anyone remember Hill Street Blues? (Definitely dating myself...lol)
Sue

Hill Street Blues, I can hear the music now, well then Sue I must be dated to...............
Sorry you are wiped out, I hope you improve.
I have the opposite problem at the moment its cool weather, and my body doesn't like being cold. I would hate to think what it would be like if I live somewhere really cold, I guess I should be thankful I'm not an Emperor penguin!!
Kate

HI Sue!
 

Hey hon! You are sooooo right! This Texas heat is awful! I spend 5 min outside and come in bloated and tired - so tired. I used to LOVE the heat and would tan for hours, but I figure white skin is in again - plus I was getting liver spots, so tanning is out of the question!

How are you today? Are you stronger?

Where in TX do you live? PM me if you feel safer that way!

Thank you so much for checking up n me - it means so much!

I never in a million years would have thought that I'd be a computer person, and now I miss it when I'm too tired or sick to get on.....LOL!

Love
ERin:D

hey motorhead, I like your avatar picture.
Is crime that bad on the left coast you need that norinco to go to work?

Hey Erin!

I live 1/2 way between Houston and Galveston. Have only been here a few years - but really like it. Arrived just in time for huuricanes (new experience for me).

I did have a good day today - thank you. Went to see my horse. Gave her a bath, took care of some barn chores, and spoiled her with carrots - - l-o-o-o-ots of carrots. I've had her for 24 years (she's retired thank goodness cuz I don't think I could ride now) Got her when she was 3.

Hope tomorrow is a wonderful day for everybody....Sue

thx allen. one of my hobbies. that's one of my homebuilt romys. i live in the stix, keeps the varmits at bay.

heat continues. it's summer, what else? at least it isn't burning anywhere close by. am adjusting to it. i too used to love the heat. my friends always thought i had a bit of reptile in me. have been doing best in the evenings, like 5-8 p.m.. mornings i have too many pills to deal with. not doing too badly when not roasting.

i live in crowded surburbia, dont take my .223 norinco out too much anymore.(sorry, not looking to turn this into a gun talk, although its good to see MG doesnt limit your hobby, and your eyes function well so you can build and machine homemade parts)
homebuilt, impressive indeed.

Hey Sue!
 

Hey sweetheart! I am soooo happy you had a great day! Animals are so wonderful! I am a HUGE animal lover - my poor hubby wasn't raised with any, so he does not share my love of them!

Hurricanes are really scary! Luckily, here in SA we don't have any......only the HEAT and the occasional tornado - all that being said, though, I cannot imagine living anywhare else!

Today has kind of been a rough day - my endo is giving me fits, but I just don't want to have any surgery right now - I spend enough time @ the hosp as it is! LOL! They are sooooo sweet to me though! I really love all of them!:D

Keep it up, honey! You are doing GREAT!

Love,
Erin:hug: