[Quandry]

I just had a thought -- Is it possible to have more than just the acetyl-choline antibodies in a single person. Is there a chance that multiple antibodies are at work at the same time? What if someone who tested positive for acetyl-choline antibodies also tested positive for anti-musk antibodies? Is it also possible to have other antibodies that are still unidentified doing havoc on our bodies along with the ones we've been tested positive on?

[alice md]

Originally Posted by Quandry

I just had a thought -- Is it possible to have more than just the acetyl-choline antibodies in a single person. Is there a chance that multiple antibodies are at work at the same time? What if someone who tested positive for acetyl-choline antibodies also tested positive for anti-musk antibodies? Is it also possible to have other antibodies that are still unidentified doing havoc on our bodies along with the ones we've been tested positive on?

Yes.

(I was told the answer is too short) so, Yes.

[Stellatum]

My understanding is that there's no difference in treatment when it comes to immunosuppressants. If you're going to go on Prednisone, Imuran, Cellcept, etc., it doesn't matter which antibodies are causing your MG. The treatment would be the same if you had this antibody or that one or a combination.

It may be that non-immunosuppressant drugs like Mestinon work better for some antibodies than for others. But with Mestinon you can just try it and see if it works.

So I can't think of a reason why it's important to know exactly which antibodies are causing the MG, once it's determined that the patient has MG (of course it would be very different if the problem was CMS, which isn't an autoimmune disease). Can anyone else?

Abby

[alice md]

So I can't think of a reason why it's important to know exactly which antibodies are causing the MG, once it's determined that the patient has MG (of course it would be very different if the problem was CMS, which isn't an autoimmune disease). Can anyone else?

Not all autoimmune disease are the same and the treatment is not uniform.

For instance-Rituximab is very effective treatment for Rhematoid Arthritis, but much less so for SLE.

Likewise IVIG is much less effective in MuSK than it is in AchR MG. On the other hand PLEX tends to have a dramatic (albeit short lived) effect in MuSK and less so in AhcR MG.

MuSK is caused by IgG4 antibodies (which mostly exert their function by blocking the function of cellular pathways) whereas AchR MG is caused by IgG1 antibodies (which mostly cause damage to membrane proteins by activating complement). So, it is not surprising that treatment which is very effective in most AchR patients is much less so in MuSK patients.

So, yes it is important to know (even though it is not always possible) what type of antibodies a patient has.

[AnnieB3]

Quandry, The immune system is complex and they still don't know everything about what treatments are best for exactly what kind of disease. Like Alice said, some treatments do work for some diseases or people but don't for others.

I think the important thing is to try to work with your neurologist to see what works best for you. Have you discussed IVIG?

Alice, I did a lot of research on this early on. Any of the IgG subclasses can be involved in MG. And I believe that is why some people might have a more mild course of the disease as opposed to others. I don't want to get into a long discussion here, for the sake of Quandry, but I had to bring this up.

http://www.ncbi.nlm.nih.gov/pubmed/3621677

http://brain.oxfordjournals.org/cont...ws025.abstract

https://openaccess.leidenuniv.nl/handle/1887/20412

http://books.google.com/books?id=V61...20IgG3&f=false

[Quandry]

Originally Posted by Stellatum

So I can't think of a reason why it's important to know exactly which antibodies are causing the MG, once it's determined that the patient has MG (of course it would be very different if the problem was CMS, which isn't an autoimmune disease). Can anyone else?

Abby

The reasoning behind my question is that I don't take any immuno suppressants for fear of high risk of cancer and I don't take Prednisone because of steroid psychosis. All I'm taking is Mestinon, but it doesn't work on every muscle. It works on my diaphragm, but not on my swallowing, my back, my chest muscles, etc... If there is another antibody at work and if there is a med that I can take along with the mestinon to help with these antibodies then I think it's something to look into.

[pingpongman]

I started out Negative 2 1/2 years ago, today I'm positive for four antibodies but my treatment has taken the standard steps. Mestinon, Imuran (no longer), Cellcept, Ivig and my levels of each antibody has increased the last two blood tests. So in short I agree with Abby. I have 2 Neuros working on my case.
Mike

[Quandry]

I'm on state medical and can't work and I'm waiting to hear from Social Security. I talked to the doctor the other day about IVIG and he said it's really expensive and that my medical won't cover it. I'm kind of in a hard place right now to get the proper care I need.

[pingpongman]

Hope you hear from social security soon. From what I have read is you will likely have to appeal their decision. Ivig is expensive if my memory is correct it is about $1300/$1500.
Mike

[alice md]

Originally Posted by Quandry

The reasoning behind my question is that I don't take any immuno suppressants for fear of high risk of cancer and I don't take Prednisone because of steroid psychosis. All I'm taking is Mestinon, but it doesn't work on every muscle. It works on my diaphragm, but not on my swallowing, my back, my chest muscles, etc... If there is another antibody at work and if there is a med that I can take along with the mestinon to help with these antibodies then I think it's something to look into.

If I understand correctly you are looking for better symptomatic care.

You should consider (if there is no contraindications) discussing with your physicians the possibility of ventolin or ephedrine. You may also consider trying food supplements which can improve muscle energy production (such as those being used by athletes to improve their performance-coenzyme Q10, carnitine etc.).