hi, ssebert3

since early 2011 i have been with bulbar generalized mg. in the hospital was put on 980mgs dayly od mestidone and 190mgs dayly of prednisone, given plasmapheris

basicaly they where and are 2 drugs for mg which work good the side effects are as others but more managable, unfortuntly they are no magic bullet, both drugs have side effexts, the only one that i knotted on mestidone at least on me was diarrea when taken large doses

yes prednisone have side effexts, but they are managable. they are

high blood pressure
hi blood sugars
hi cholesterol
moos swings

these side effects are when you are taken hifg doses of prednisone and they decrease and dissapear when you reach the minimum set by neuros it warry but mine set me up for 30ngs. of mestidone dayly and prednisoene 5mgs every other day, which also you can stop for couple od day then take it back on

i have to make the following stament on prednisone for you to undrstand the function and value of it for our desease

the human body produce 5 to 7 mgs. of cortisol dayli, which is our requirement, prednisone is a cortisol (corticoid steroid) matching our natural cortisol,
it is an antiimflamatory, which will fight inflamations, infections and others.

it is not a magic bullet but it is the saffest of all, the only thing that you should do to help these drugs to full control of our desease is 3 things
1) full control of all emotions
2) learn to control your dayli activities and sports (slowdown has needed)
3) unfortunatly a need of life changing, meanning foods, ect..
4) if you use lots of logic and commun sence, you will be able to control your own destiny

i am 80yrs old and belive me, we can beat around the bushes, but only one thing matter, have a good comunication with your neuro, i beleive you have one that will work with you,also it is imrortant that you have a endocrinoligits to hael with all drugs and they body response to them

best of luck

Andre

Hi Andre -

Thanks for your response. and sharing your thoughts.

I am torn between dealing with what is happening to me now and what may happen in the future. Prednisone has some aspects that are interesting in that for many it has had a positive effect. It is also concerning due the the side effects.

I guess the only way to know is to try and see what happens.

Thanks again,

Scott

Sorry to hear you"re having such a tough time. Unfortunately, that is MG. I was diagnosed in May 2019, and my neurologist decided to start off easy with the prednisone(5mg daily). Nope. Eventually up to 50mg daily to get the desired response. I take prednisone along with mycophenalate(2x500mg twice a day), and mestinon(4x60mg every 4.5 hrs). I've also had 4 IVIG treatments and 1 Plex. Saw neurologist 2 weeks ago: he's very pleased with my progress. Feels any problems I am having are due more to meds. than the MG. Decided to start tapering the prednisone. Now taking 35mg daily, with a reduction of 5mg weekly, We'll see how that works. My reason for sharing this with you is to let you know you are not alone. You must find out what will and will not work. With MG, it usually is trial and error. Talk to your neurologist and together devise a plan that works for you. Whatever someone else had or did may not be your magic bullet. DO NOT be reluctant to ask any question. It's your life, and you have MG. You need to knoe everything you can about the disease. Only then can you make informed decisions that effect your life. Get well, stay well. Peace Joker46

I’m glad to hear you are improving joker.
My concern here is that sseibert3’s doctor is letting them linger in a less than desirable state without any real treatment plan. Talk to your doctor and get a plan together to get you functioning again.
You will get there.

it's probably fair to say that at the beginning when the diagnosis is confirmed MG can hit fairly hard, simply because a threshold has been reached. - more and more muscle junctions are being attacked. it is also the time when the neurologist has to begin the process of determining just what treatment will work for you both in the short term and long term. Personally, my route was conventional certainly prednislone and mestinon, neither of which are particularly nice, but needs must. I also had a couple of courses of IvIg to tide me over the worst periods. It was a fairly rough ride as I recall over those first twelve months! On the plus side just about all of us come out, more of less unscathed. As others have said you need to talk to your doctor and get from him/her what the plans (hopes and expectations) are for your treatment. It's well over ten years for me and I am in 'remission' albeit drug controlled. Life is good and no doubt will be for you, but it does take time and the drugs we take are not nice but necessary.

Take care

Peter

Thanks for your responses.

I do not know what to do with this thing.

I am listening to ya'll, my Neuro, my PCP and bouncing things off of them/you. Oh, and listening to the boss as well, my wife.

Much is happening and at the same time not much positive is happening.

On the suggestion of my PCP, we will continue the current treatment course until November and try to evaluate the situation then and make some treatment adjustments if required.

If I were to stay in my current condition: DV and general fatigue, I could live with that. I have no problems chewing, holding my head up, speaking most of the time. I would like to get back to bike riding - usta ride 18 to 20 miles 3 to 4 times a week. Hard to walk a mile now and certainly not in heat greater than 85F or so. Would like to be able to wash my car again without it wiping me out.

I do not know what I should expect or how to get there. I am hesitant to push my Neuro one way or another.

So........I will do my best tomorrow and do as much as I can and hope that I will get better and be happy to not go into a Crisis.

Guess I'm rambling so I'll sign off for now.

Thanks again,
Scott

HI, Welcome to the group.
I took prednisone, started low and gradually increased from 20 to 60 mg per day). I also used about 6-8 mestinon per day initially to let me function. Both meds had problem side effects, but I had decided (age 65) I wanted some active life back and figured the side effects weren't as bad as severe MG, for me, anyway.

My neuro worried I would get diabetes from the prednisone as I was already borderline, so I did a diabetic diet during prednisone and tested my blood sugar daily. At about 3 months into treatment my double vision began improving and about 5 months my MG symptoms were gone so I could start tapering prednisone.

As you mentioned that your FSH was high, I had that too, and osteoporosis. In testing for the osteoporosis (aggravated by prednisone) my testosterone levels were extremely low. The endocrinologist thought maybe it was related to the high dose prednisone, and prescribed testosterone replacement gel. I tapered prednisone to zero in the next few months and MG was gone too (6 years ago).

I thought it was testosterone replacement that helped. Not likely said the doctors, but somewhat possible as very low testosterone can mess up many of the body's systems my endocrinologist said.

I haven't found anyone else that took testosterone and their MG disappeared, and really don't know if that happened for me either, but it certainly is worth the testing. FSH being high can still mean you have normal testosterone levels, as it is produced to tell the testes to produce more--and it may be doing that as it should. In my case they didn't respond. Not sure what happened as I did have a normal sex life, a child, but somewhere around my early 60s something happened that turned them off. For me that meant a life without motivation, ambition, and sort of deadness, and of course no libido.

MG is a disease most often of young women after puberty and older men -- post 60s, and it seemed to me that hormones may have some role in this. Anyway, I still take enough to be low normal and am still in remission.

You know, the double vision was one of the most annoying symptoms I had. The breathing problems and weak muscles were bad, but seeing the world doubled or with one eye only seemed like 1/3 of normal vision. I had ptosis too, and so learned to let either eyelid close and use just one eye that way. I could, and did alternate them so as to think I was "saving" both of them. I also learned that when driving with one eye shut, as I approached an intersection or something that needed two eyes, I could tip my head far back, and looking out of the bottom of both eyes, the double vision went away, I couldn't keep my head back, but it was comforting to know I could get some normal vision when I needed it most.

Good Luck
Russ

Hi Russ -

Thanks for your comments.

Had another blood draw a couple of weeks ago and the results are in. Testerone is at a normal level but my FSH level was elevated. We don't know what that means but will have another blood draw next week to verify results.

Wikipedia says:
"High FSH levels. The most common reason for high serum FSH concentration is in a female who is undergoing or has recently undergone menopause. High levels of FSH indicate that the normal restricting feedback from the gonad is absent, leading to an unrestricted pituitary FSH production.FSH may contribute to postmenopausal osteoporosis and cardiovascular disease. [18]

If high FSH levels occur during the reproductive years, it is abnormal. Conditions with high FSH levels include:

Premature menopause also known as Premature Ovarian Failure
Poor ovarian reserve also known as Premature Ovarian Aging
Gonadal dysgenesis, Turner syndrome
Castration
Swyer syndrome
Certain forms of CAH
Testicular failure.
Klinefelter syndrome
Systemic Lupus Erythematosus also known as Lupus [19]
Most of these conditions are associated with subfertility and/or infertility. Therefore, high FSH levels are an indication of subfertility and/or infertility."

If the test again shows high FSH levels then we will have another MRI - Pitutary specific to "see" what might be there.

BTW - Had a vasectomy about 30 years ago after our second child, have good labido.