Most likely not the best of ideas. I guess it seems your mestinon has come back down as a result? So that is good. Did you consult your MD about this? Cellcept says it can stay in the system for about 15hrs, if I remember correctly...

We aren't supposed to be lowering or raising our dosages on our own, except for mestinon...

I totally agree. These medications are not to be dealt with lightly. You take your life into your own hands when you act outside of your doctor's instructions. Whether the doctor specializes in MG or not they are not prescribing medications willy nilly. There are huge risks in changing your dosage and/or frequency and most of us don't know what all of those risks are.

It's not worth it. Try to follow the instructions of your doctor. If you aren't confident that it is what's best for you then consult another doctor but don't be afraid to question your doctors reasons either. Perhaps he just hasn't explained things in a way that makes sense to you. He may have other goals or objectives. Ask more questions and see what response you get before you act too hastily.

I wish you good health and happiness.

The muscle deterioration is a little complicated:

--the antibody attack that damages our neuromuscular junction in achr positive MG. The attacl is on the muscle receptors. It changes the physiology of the junction--destroying receptors and flattening the endplates where the receptors reside -- when MG symptoms are present 80% or more of the receptors have been destroyed. The good part is that they can grow back rapidly when the antibody attack is lifted.

--with decreased receptors (or in other types of MG, decreased communication for other reasons), the muscles can't get messages and so are not able to be used as much--and of course over time with muscles not used, they atrophy.

So, with MG, mestinon helps the communication but does nothing to stop ongoing receptor destruction. IVIG gives the receptors a break from attack; the chance to regenerate and let us feel good, but it has to be repeated at regular intervals as it wears off and the attack begins again until you again feel weak/tired.

Cellcept, Imuran, prednisone and other drugs that lower the production of bad antibodies and thus the attack are the usual treatment for MG. With enough immune suppression MG symptoms can completely disappear. However, that may be so much immune suppression that we start to get many opportunistic infections and quite serious diseases that are not prevented or cured by our immune system any more.

So, sometimes we are left with a compromise: somewhat lowered immune system and some MG symptoms left --a balance that Mestinon can help us to keep functioning.

The balancing act is continuous and efforts to find the lowest effective dose need to be ongoing. Some folks can completely get rid of MG symptoms and still have enough immune system to get along; others need to accept some MG symptoms, and a few may go into remissions of various lengths at various times during the disease.

That is why doctors tend always to be aiming us towards lower doses of the immune system drugs until symptoms get uncomfortable. Heck of a trick trying to get to this balance, but remember this is a chonic disease and we will be adjusting things indefinitely.

That said, most folks do get this in balance and return to active lives with MG receding into a nuisance rather than a crisis.
Good Luck

Russ so what the doctor is saying is the receptors that are being destroyed will no longer be able to grow back without more aggressive treatment?

When neuro # 1 put me on Cellcept he said "this is for life". "Mestinon we can adjust as needed".

I think that is what is being said. So, IVIG, prednisone, imuran, cellcept or other drugs that lower the production of bad antibodies really need to be added to the treatment unless it is a quite mild form of MG and doesn't progress.

Mostly IVIG tends to be early if we are quite weak--quickest boost (also PLEX does that), but most of us end up on one of the drugs that lower antibody production. And of course, thymectomy may help some people too.

Thank you Russ. That helps. Had a thymectomy at 19 & that is what put me in my first remission. The doctor said he hopes I go back into remission on the cellcept.

Russ, that was an amazing post. I have started to figure it out, but what you said makes a lot of sense now.

I am on Mestinon only. I know there are dangers to immunotherapy, but am temped to bring down the symptoms.

Interesting, I have been reducing my Mestinon recently and felt better.

I have a question: Which drugs bring about a crisis - all of them or just Mestinon?

Thanks for being here Russ.

Thanks for explaining that so well, Russ. It helps. I've held off on
the big guns b/c I am ACHR negative so far. I'm in the process of having the MUSK test. Meanwhile, I'm having some relief with the Mestinon.

Good to know!
Thanks

Mestinon is for symptoms management, so its use will vary, but the other medications are your treatment of the root cause (as best as we can do right now), so doctors should oversee the dosages of those medications. That said, we need to find doctors who are competent to manage those medications, too, so we need to be smart consumers when it comes to engaging the services of neurologists.

CarlyMichelle, it concerns me when people hold off on treatment because they are seronegative. First, Mestinon is not a treatment at all. Second, the commercial test available is insufficient. Third, there are antibodies we may not know, which could respond to treatment. Fourth, there is no correlation across individuals between levels of antibodies and severity of symptoms (only within the individual could this be useful according to my neuro, who is the MG guy in my area). Seronegatives too often end up under treated, in my opinion derived from personal experience, and then everyone is surprised when they don't get better; after all, they are seronegative. They should need less aggressive therapies, right? Also, withholding treatment because one has mild MG seems in direct contention with the knowledge that MG is progressive. Heck, there has even been a study showing how the prophylactic use of prednisone can slow down the progressions from ocular to general MG. Relying on Mestinon alone, seems like a huge gamble with long term health. I guess that's the end of my rant which comes from love and concern for all. :-)

MG is serious--and in too many of us keeps progressively destroying our ability to use our muscles. Since the attack is from bad antibodies, the treatment is to try to lower production of them as well as treat the symptoms. Most of our problems are in the early stages where we are just getting underway at trying to get control.

MG crises often are a result of breathing problems. That is why I went into the hospital--couldn't get enough breath to walk around and barely enough to sit still. More mestinon was the immediate answer that worked OK for me.

Many times an MG crisis is caused by something that we would normally handle without difficulty--a cold, flu, etc. When we have poor muscle response from the MG, and in addition if we are on an immune suppressing drug, small illnesses make us much sicker than normal, and our immune system doesn't bail us out.

So, many things can cause a crisis when we are living on the edge --primarily in the early stages where we haven't gotten MG under control. As we get it under control and balance our immune system and MG symptoms, things improve.

Of course, we do have to head to the doctor's office or ER quickly, as things that would be minor for a normal person can be major for us! Don't mess around waiting to get medical help, just do it!

And--remember the blood tests for MG are all relatively new. Not so many years ago all diagnosis was based on symptoms and response to the mestinon type drugs. Several different antibodies have been found that can cause MG, and undoubtedly there are more to be found, so seronegative MG is likely to disappear as a type of MG when more info is available.

Sticking up for Mestinon, again:
It is a treatment although it is a treatment that happens at a late stage in the game. It is the safest and most specific treatment we have for symptoms.

At this point even the immune suppressants are just treating an earlier stage where the autoantibodies are being manufactured; it is non specific in that it hits cells we want as well as those that are causing trouble. In its way, you could say that they are symptomatic treatment, too. Whether or not they are more helpful than Mestinon alone may depend on the person with autoimmune myasthenia. Taking out the thymus is another approach to getting rid of most of the problem cells

Prednisone whose action is more multifocal has been shown to halt progression in some people with ocular myasthenia. But so far we have no way of knowing which ones they will be. It is also a lifesaver in crisis along with PLEX and IVIG.

What is not known is why the cells making the autoantibodies went off track in the first place; and there are experimental attempts to intervene more specifically to target just the cells causing the problems. Then there are experimental attempts to retrain the cells to recognize that the antigens associated with muscle function are "self." That goes back another step.

But prevention and understanding why we have this problem to begin with . . .?

That said, I quite agree with elinor. We cannot be satisfied with casual dismissal of symptoms by our doctors or others, especially based on the blood studies we have. Seronegative people need to be treated as aggressively as those who are seropositive to regain or maintain the best life conditions possible while we wait for more information and treatment; and most of us will require more than Mestinon. The betting odds are that for your own good you better do more than Mestinon, so that MG does not progress, so that you can continue to live and function to the fullness of your capability. But those are betting odds, not guaranties. That is the reason we need to find the most knowledgeable people we can, who have a grasp of our particular problem and have seen so many people with MG that they can anticipate to some extent treatment outcome. Sadly, that is no person online here, although we can share our research sources and our personal experiences. When we start talking about what MG is and does, we are stepping outside of our field of knowledge and even the experts in the field have a lot to learn. b.

i don't disagree that mestinon is needed. i think using it exclusively will result in progression. i wish we had a missile with a specific target to attack what we got... instead of this great big ol' hammer.