For me it started in the beginning of 2009, so 4 years already. It got worse and worse, because I didn't use any immunosuppressants or anything. However, I have been on those since 2010.

But now my question is this: my MG is now like it was in 2010, it's quite severe and does seem like I need respiratory support soon. I'm already back in the wheelchair fulltime, and cannot eat or drink.

But I wonder, I still use prednisone and others, but this worsening started since I lowered the prednisone.

Is this worsening because of the "natural" progressivity of the disease, like it gets worse the few 5 years or so? So it's kind of logical to have the same amount of weakness when I had at the beginning when I didn't use any immunosuppressant?

Or is this because once you start prednisone, and you lower the dosage, MG gets a bit of room...like give him an inch and he’ll take a yard?

Because I just find it weird, that with over 30 pills a day more (including mestinon) the muscleweakness is the same as it was 2,5 years ago. How does this mechanism work?

PS those 30 extra's do help, so it's not like they make it worse.

[Stellatum]

Would you like to post a list of what you're taking? Prednisone and Mestinon, right? What else?

Abby

[AnnieB3]

When you withdraw from Pred, you can have symptoms of an adrenal crisis. How quickly are you withdrawing from it? Are you doing it on your own or is it something your neurologist said to do? It can be a very tricky thing to do! If you do go off too quickly, you can have an adrenal crisis. You can get dizzy, mild to profuse sweats, increased weakness and other symptoms.

So it might be the withdrawal making you weaker, not necessarily the MG.

I hope you will speak to your neurologist as soon as possible about this! Some doctors don't realize that there are patients who are more sensitive to steroid withdrawal than others. I know someone who nearly did go into an adrenal crisis when a doctor dropped their dose too quickly and by too much. It's quite dangerous.

And Abby has a good point. You need to talk to your doctor about everything you are on, including supplements! You can't know what "mechanisms" are at play until you and your doctor look at all of the "players" like drugs, supplements and possibly other disease states.

Please see a doctor as soon as possible.

Annie

For the MG I take: mestinon, mmf (cellcept) and prednisone.
I take more medicine, but those are not directly MG related, like side effect drugs (diabetes meds, ulcurmeds, heartmeds, RA med, thyroid, bowel, bones and painkillers). Most of them I take for a few years now.

I tried azathioprine and methotrexate but that was no use.
The only thing that does help is more prednisone, but that's just not an option for me.
Ivig, rituximab and plex are a risk for me, so the docs now decided it's "up to me" to decide, which is hard. They want to higher the prednisone, but at the same time start a whole bunch of meds for the side effects: lithium, insulin, oxazemap, cataract eyestuff, something for my heart and statins. Most of them have serious side effects, loads of them directly on the muscles.
I do not believe this is the solution. Yes, maybe "their" disease is less likely to turn real nasty, but it seems much easier to just pull out the plug.

So, not until I really am paralized fulltime and allover, I still go on like this.

@Annie, I do not think it's the withdrawl, it's only 10 mg less, and this is done in a period of 2 months, so slowly. My docs did it.

I see a doc almost everyday, they don't know what to do with me, and send me to other docs. Most of them still believe my only option is to do the above.

Does anyone know other meds to try besides: mestinon, prednisone, methotrexate, cellcept, azathioprin, cyclosporin, ivig, plex or rituximab? Something to try? Hope someone does...

[pingpongman]

Raven I want to mention 2 things. First when I first got my DX I went to see a neuro-muscular Dr and the first thing he said when he saw my med list was "NO STATINS PERIOD". The second thing is my doctors have mentioned PLEX several times but my wife says no so far because she feels it is too invasive. I'm sure your condition is worse than mine and decisions like this call for a lot of thought. In my case at my age the cancer risks are a minor factor but if I were younger I would consider it more.
Have faith that whatever decision you make will be the best.
Mike

[alice md]

It's hard to give advise.
But, from the way you describe it, your illness is refractory to treatment.

There is no right or wrong approach.

People with refractory disease can either try experimental or semi-experimental treatment or choose to come to terms with their illness and receive symptomatic and supportive care.

Each approach has its potential benefits but also its drawbacks.

The same person can change their approach at different times.

I personally chose the option of symptomatic and supportive care at this point. It fit both mine and my neurologist's preferences.

I take ventolin, mytealse, Coenzyme Q10, L-carnitine , alfa-lipoic acid and vitamin B12. I also try to eat as much fresh vegetables as possible. I use tools and aids that help me function, I require assistance in some activities and receive respiratory support as required.

With this treatment my illness has somewhat stabilized and stopped becoming worse and possibly even had some slow gradual mild improvement. (over more than a year of this combination).

I may decide to try Rituximab at some point (even though I am aware of the potential risks for me), but both me and my neurologist decided that we want to have more evidence for its efficacy in my type of MG before we decide to take this risk.

I have been extremely ill and haven't yet recovered following treatment I received 4 years ago. This may possibly be a factor in my more cautious approach. As is the fact that there is very little data regarding effective treatment in MuSK MG. It is much easier to decide to take a risk (for both physician and patient) if you know that there is a very good chance for recovery, then if there is no such data.

I am very fortunate to have a neurologist I can discuss this with and reach together with him decisions that we both feel comfortable with . He is also there to support me during less good times .

No doubt that this is a hard decision to make.

Thank, well, I'm not sure it's really refractory: I haven't tried IVIG or PLEX, which may help. But I seem to have a real risk of acute kidneyproblems, because of something called cryoglobulin I believe.
I may try this anyway, because I think this is more an option for me, then the piles of medicine they want to give to me when I upper the prednisone dosage. It's true what you say: there is proof IVIG / PLEX helps people with MG, so I might try this before I try something real experimental.

I do think positive about symptomatic care. Especially my mounth and breathing problems I want to get better. I really want to eat normal food again. However, it doesn't seem to get any worse then it is now luckily. I have approximately 2 hours a day I can make myself clear, but the other hours of the day no one understands a word I'm saying, or I can only make sounds. And it's something no one can help me with (I mean, I use a wheelchair and stuff, and loads of people help me, I can type on the ipad -normal computer is to hard to use-, but I just want to talk more, laugh, I don't know...it feels weird not being able to talk fysically.)

Ventolin for MG? I have had it several years ago for asthmatic problems, never heard of it being used for MG.

[alice md]

Ventolin for MG? I have had it several years ago for asthmatic problems, never heard of it being used for MG.

It's quite funny, but Ephedrine (which has a somewhat similar mode of action) was the first effective treatment described in MG.
It was found by a physician who suffered from myasthenia in the 1930s (a few years before Marry Walker discovered treatment with AchE inhibitors).

http://jama.jamanetwork.com/article....110#qundefined

Ventolin was first used, to the best of my knowledge by a neurologist in Mayo clinic for the treatment of certain types of congenital MG. He is now conducting a clinical trial.

http://clinicaltrials.gov/show/NCT01203592

I decided to try taking it, based on the way I understood the mechanism of my illness. (none of the neurologists involved in my care ever suggested it). At that time I was nearly bed ridden, unable to sustain any activity for more than an hour and required frequent respiratory support. It led to significant improvement. For the first time since my 1 year old niece was born, I was able to hold her for a few minutes on my lap without having severe breathing difficulties.

At a later stage my current neurologist added mytelase (as mestinon and neostgimine were no longer effective). I started taking, by his advise, some nutritional supplements, because my nutritional intake was very poor for more than a year due to my chewing and swallowing problems. This led to some improvement which made me think I should gain a better understanding of nutrition and other environmental factors that can effect my illness.

There is still a lot I have to learn, but with more knowledge and understanding I have much better control over my illness. (although, I am no where near remission or even near leading what normal healthy people would consider a normal life).