A little surprised that you aren't taking Mestinon? Mestinon helps with the effects of MG whereas Prednisone has a go at the cause. I'll keep it brief at this point. Is your Dr a neurologist, with MG specialisation?

I was put on mestinon before the prednisone, but it didn't help.

I see a Neuro ophthalmologist at Washington University in St. Louis He said he works with a lot of MG patients and that he would send me to another Dr if he feels like he needs to.

He thought the mestinon would be like throwing a bucket of water in the ocean and took me off prednisone started.

Thanks for your help!

Interesting route but it doesn't seem as if you have generalised `mg 'just' ocular which should mean you're with the right guy.
There's a good article here which would seem to validate what he is doing for you.

https://www.eyecaretrust.org.uk/view.php?item_id=95

Sorry to hear you are having problems with getting MG under control. I started with Mestinon and then as MG progressed rapidly (a few weeks from diagnosis of ocular to general MG). started prednisone. My neuro said Mestinon would get me through until the prednisone worked. For me that was true, It took about 4-5 months before the prednisone worked (I started at 20mg/day and ramped up to 60mg/day) In the meantime I took 6-8 Mestinon 60mg pills per day mostly morning and afternoon -- it let me function during those early months.

Most neuro's start us at far too small of a dose of mestinon to make much difference. I started at 3-60mg pills spaced through the 24 hour day. After about 2 weeks I was hospitalized for breathing difficulties and all that they did there was put me on 90 mg every 4 hours. I found 60 mg every 3 hours about right to actually do things like chew, type, walk, breathe etc. When Prednisone finally worked then Mestinon was not needed (or at least not the high doses).

Some folks do not get help from Mestinon, but most of us do. My prescription was -- up to eight 60-mg pills a day "as needed" and a time release at night (I didn't like the time release and as I didn't need to do anything at night but breathe and a CPAP made that OK without mestinon).

Prednisone is supposed to start helping in a month or two, but many of us know it took much longer to be really effective for us. I probably noticed improvement at about 2 months and by 4 months most of my symptoms were much better and 5 months mostly gone -- however it was sort of a slow progression and subtle to notice happening. When I got to the place where the prednisone side effects were more noticeable than the MG problems, I knew it was under control and we went into the tapering down process.
Good Luck
Russ

Thanks Russ and Peter for the info. So, I guess I am being a little impatient with the prednisone if it takes 2-4 months to notice .

I am having a lot of stomach issues and rapid heart rate which I guess is the prednisone.

My Neuro called it "bulbar" MG since I have the swallowing problem.

I think a lot of my problem is my job which is very physical and outside in the sun and heat. I don't know what to do. I work for my husband and ride to work with him. I cant drive myself to another job.

Just stinks.

h

sorry to hear that you having much problems, most of the undercontrol is due to the not treating you with the proper dose, then come down as control of mg. occure, the best starting dose o mestidone is 180 mgs. untill you can feel improvements then come dow evry week 3o mgs. untill you reach the minimun, unfortunatly, you will not accomplish bettemrment of you mg. if you underplay the importance of this 2 drugds (mestidone and predinisone) 8 reas ago when mg. hit me like a brick wall, iam 79 yrs. old and, could not breed, chew drink speak, my limbs where very weak. after they discovered mg generalized with respiratory complications, was send home after having my blood cleaned and 5 days of gamunex30 (plasma) with 1000mgs of mestidone and 280mgs, of predinisone, my neuro worked a plan with me in the reduction od meds, and after 6 month i was with the minimu m 39mgs. of ryristosgamine and 5mgs every other day of predinisone, accepting that meds. works differently on evry person, you have to use commun sence, and have clear discutions with you neuro, dont forgrt this is your problem and your life, nobody can tell you what is what only you, also with mg. you becomming week, this is a pain in the neck, which you cant escape, you may have to change your activities, to a more relaxed life style, keep awy from getting stress as with mg, it is your worst enemy, as it will send you to the hospital, i know because this last year and this year i have suffered the worst relapse a person can have (STRESS,) we lost our daughter, my wife had breast cancer surgery twice and other operations, so in november they wanted to intube me,as a fighter that iam i refuse and deated with it with locts of logic and communsence, belive me it will work to your benefit, as for weaknes in the legs or armes, use a tensill machine 10 minutes dayly, tou will be surprise at the resulst, if you have any questions, please ask ont be dhy
best of luck fighter)

So sorry for your loss of your daughter. I can't imagine. We also just lost my brother unexpectedly 2 weeks ago. I noticed immediate worsening of symptoms.

Hi Julie,

I have generalized MG, so I am a dummy when it comes to ocular or Bulbar MG, so keep this in my mind with my opinions :-) And I know when you don't feel good, you want something to work ASAP!

I thought prednisone was "fast acting" and gives most of its benefit in 1 - 2 weeks, but I could be wrong as I see Russ comments are different than my opinion.

But, as others have mentioned, I think you should give Mestinon another try, really not sure about the bucket in the ocean thing.

Also stay out of the heat..... I know that's your job, but heat will exacerbate your conditions. As a suggestion, find a way to work only during early morning hours, and call it quits at lunch time.

I am sorry to hear of your struggles, and wish you get well soon.

Joel

HI, Joel! My husband and I were discussing our options last night. I don't see how I will ever get better if I keep exhausting myself this summer. We live in St. Louis where heat and humidity are horrible. He owns a small 2-person business, so me leaving would really hurt business. Its not a job most people would take either, so replacing me will be difficult.


I see my Neuro on the 9th and plan to hit him with more questions about meds.



Thanks for your help!

hello, i just want to make a clarification for better understanding of the value of mestidone and prednisone, they are not a magic bullets, but they are the next best thing for mg, the cause of mg is the bad neuros receptors, those the only can be replaced by plasma which most likely a mg. patient will be forced to undergo sometime during a life time. in the meanwhile it is important to use mestidone as it balance no getting plasma, the prednisone is a corticoid steriod (as cortisol) which the human body produces 5 mgs. dayli if yoy dont tke it your body cannot fuction as it should. how you accomplish balance is only by try and error, we as patients to the forum can bring our experiences to every body, and mayby each of you can take a bit of information and put it to good use,dont forget that doctor re practitioners, we involontary become to practitioners, but please just remeber what i say all the time, we are in control of our decease and we have to find the best way to help us to go forward , and make the best of our lifes.
iam a person that usr commun sence and logic, this will help you more than anything it will clear you mind of the way you should use meds, with out being afraid to make a mistake. also most of you will have to change you lifestyle to love a better and stable life
ood luck to all (fighter)

Thanks, fighter! When I see my Neuro on the 9th, I will ask to restart mestinon.

What dose do you take? I think I had 60 mg 3 times a day..this was before I was diagnosed by EMG

hi juliecr, as i whent into my worst relapse in november i was set up for 1 yr. plasma done twice montly, i was en contrl to set up the intake of my mestidone and predinisone, i was taken 180mgs for 2 weeks as well 25 mgs. of prednisone as i felt a little beter i started reducing my meds. the 3 week, 150 mgs of mestidone and 20mgs, of predinose, then every week reducing by 30mgs. of mestidone and 5 mgs. of prednisone, now i am at the menimun 30 mgs. of mestidone(pyristogamine) and 5 mgs. of prednisone every other day, i am doing good and the plasma is covering me for another 5 to 7 yrs or who knows, i have learn to control my stress, my life style changed few years ago, and i have to be stritck in my foods intake, no gmo, no red meat,or proceded foods, walk 45 minutes every day slow to brisk, that will help your muscles better then strenous excersices whick will weekend your body, also i use a tensill machine (hand held), for relaxing the tense weak and painfull muscles, it works wonder, after using it my muscles feel "fresh", and at this point i am in full control of my problem, my neuro is realy amazed of the way i conduct my remision. so if i can control my destiny so can every body , just make certain that you have a clear discution with your neuro, and dont let every body give you the bussiness and delays,
best of luck Andre(fighter)

Juliecr - sorry to hear about your problems. Everyone with MG is different. I first had droopy eyelids and Mestinon helped right away. In addition to that my Neuro put me on Prednisone that helped a little. Finally he prescribed IVIG which further helped. MG is characterized by rapid tiring of the muscles, but recovering with rest. Hot humid weather exacerbates the condition. If possible, move to a temperate climate, e.g. Reno,Nevada.