Yes, support from others who know what is happening with MG is very helpful. However, we must remember that many of the folks here have more than MG and so their situation can be very complicated and their choice of medications quite limited. We also know that most of the folks who get MG under control do not stay here as regular contributors, getting on with their lives. So this forum is not representative of an average person with MG (I am not representative either as I am in remission and still here).

And yes, there are certainly variable responses to different treatments, from good to poor or not at all.

What most of us have in common is our immune system has turned on us and manufactures antibodies that attack and break down the communication between our nerves and muscles -- leaving us weak and tiring quickly.

The treatment is essentially the same at core, mestinon or IVIG or PLEX to assist with the communication still working and get us through the immediate problems and then something to stop or lower the production of bad antibodies

The second part may be thymectomy or one or more of a set of immune system lowering drugs. The second part is the most variable in choice and in effectiveness.

My own choice was whatever the neurologist thought was the quickest way to control and back to a somewhat normal life. I wanted to breath, walk and function. She said prednisone and mestinon would be the fastest but at the same time might have the most annoying side effects. I wanted at least limited functionality asap so chose that and we kept pushing the dose higher until it worked. The side effects were a problem, but much better than MG itself even at high levels. And I knew that after getting control, I could likely taper down to rid myself of the worst side effects.

It worked OK -- control in about 4 months at 60 mg prednisone per day. At that time I was pretty functional physically -- walking OK, breathing OK, and feeling normal except for what prednisone did. I realized I could live with this amount if I had to. My neuro expected I would likely get to about 15 or 20mg per day and be stable. I tapered down and found that I was one of 15% who went into varying lengths of drug free remission (27 months now).

I know if MG returns, I will start prednisone, move to a high dose quickly and expect to again gain control, and again then go through the taper to least effective dose. I may or may not get off of it, but I know that for the majority of MG folks (at least the internet and my neuro claim this) it will work. The alternatives to prednisone can come after I get control and if I decide the prednisone side effects or dose are too high.
Mom took prednisone from age 65 - 91 at about 12-15 mg per day for polymyalgia rheumatica and told us the alternative would have been a miserable life vs a decent one.

Good Luck

Rhanson, yes many people have multiple diseases and having chronic bronchial asthma does me no favors either. Also not only are patients different physicians have very diverse treatment plans. My neuro tried me on a low dose of prednisone for 2 weeks and then tapered down to one table 3 times a day for one week. It didn't do a thing. Perhaps if he had given it to me longer it might have helped. Going onto my 5th month now of being mostly bedridden, using a walker, barely able to dress, cant even brush my hair and only taking mestinon varying doses fighting side effects and can't get any of them to work. I'm ready to get aggressive I'm sick of this. Plasma transfer was useless. I want to try imuran and prednisone again but my Dr is against prednisone. He's the Dr of course and not me but I wonder about pressing the idea with him.

Its wonderful that you are in remission and I certainly wish you continued success with that.

With mg or Lems, you have to be your own advocate. If the doctor refuses to offer effective treatment, you have to find one who will. Many here have been through multiple doctors to find one both knowledgable and willing to treat.
Have you gotten a firm diagnosis yet?

I agree. You have to be your own advocate when you have MG. This is difficult for me. I understand most issues/information concerning MG and treatment, but I don't communicate well when under pressure. It's nice when I have a doctor will come down to my level of understanding/communication. Most people here are on Neuro #3 or #4. I am blessed to have had only one.

I only went on 20 mg of prednisone, Imuran and then started IVIG 2 years later after I had an exacerbation. I am trying to wean off of prednisone, currently. I will NOT get on it again, unless it is an issue of life or death...if I have a choice. MG is progressive, so be careful. Mestinon treats the symptoms, not the disease. Also, mestinon side effects are the symptoms of the disease. I have taken too much on several occasions and thought MG was getting worse, so be careful of that.

I am currently not taking mestinon; I have monthly IVIG. IVIG has really worked for me. Before IVIG, I could only sit up and hold my head up for two hours a day--even in my recliner. I had no core / neck muscle strength to do anything else.

So, I guess I am not the norm either, Russ. MG is moderately controlled for me, and I am still here. I try to be a blessing to people newly diagnosed or who are searching. This can be a scary time in life. The DS family has helped me find answers to a lot of questions. Hang in there.

Best Wishes.

Yes, it can be sooo frustrating to find the treatment that works for you. Everyone is different, and responds differently. But, Desertwind, I'm concerned your doctor won't prescribe Prednisone , especially since you have such severe symptoms..bedridden, etc! I suggest you find a different doc. Prednosone IS the drug of choice to treat the disease, not just the symptoms. I was on 60mg/day for the first nine months just to,get me stabilized and feeling good. I also took lots of Mestinon during that time. I've now reduced my Prednisone to 17.5 a day, and that is after almost 3 years.

Aren't you the one in Yuma? I'm in Tucson and have great docs. I know you think your doctor is treating you well, but as others say, lots of us have been thru 3-4 neurons before finding the one who gives us the treatment we need,

I am so sorry for your condition and status, and hope you feel better soon!!! Keep on this site...we'll help you.

I'm glad that I read this thread. I just posted about my dad having MG and we're also having frustration trying to figure out how to handle his MG in the face of recent cancer issues (not to mention a skin cancer he's had for years). Reading this thread makes me understand much better the real problems with finding treatment for MG that is individual. With my Dad, we found out the MG medication he was taking (I don't know which one, as he doesn't live in the US) was one that wasn't recommended for people with skin cancer. The doctor who is treating him (who has been great) didn't think to ask him, nor did the doctor who is working with him on his skin cancer think to ask, probably because MG is so rare that they don't think to ask about this. So no one knew until it was too late and my dad developed a secondary cancer in his lymph node (which he was operated on last month and is waiting to go through radiation treatment). Now he is off his MG meds and all is on hold until he is through with his radiation treatments to figure out what he does now. It's very frustrating and also very frightening. Luckily, he's been in remission for some time an seems not to be showing symptoms so far even though a recent blood test showed the antibodies increasing.

Tam

Thank you everyone for your input and help. TamMay so sorry about your Dad and I certainly pray he is better soon.

I guess I have shifted into COMBAT MODE. Took the initiative to get a conference call with my insurance and the pharmacy company they use, their pharmacist gave me 6 medicines that I have not tried yet and arre covered by my insurance with low copays.
they are:
Ones I havent tried
CellCept
Imuran

substituting for prednione which Dr doesnt want to prescribe
Neostigmine shot
Enlon shot

Substituting for mestinon which only makes me sick
Dexamethasone
Mytelase

If anyone has had experience with any of these and feel like recommending them I would appreciate it. I plan to request at least 2 out of the 3 groups to take at once, I am weaker than ever. Im taking this list to my Dr and requesting a stronger push for improvement.

Again thank you all!