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-   -   Multiple antibodies (https://www.neurotalk.org/myasthenia-gravis/182820-multiple-antibodies.html)

Quandry 01-23-2013 12:50 PM

Multiple antibodies
 
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 01-23-2013 01:52 PM

Quote:

Originally Posted by Quandry (Post 950187)
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 01-23-2013 02:18 PM

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 01-23-2013 03:58 PM

Quote:

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 01-23-2013 04:15 PM

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 01-23-2013 05:02 PM

Quote:

Originally Posted by Stellatum (Post 950210)
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 01-23-2013 05:13 PM

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 01-23-2013 05:21 PM

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 01-23-2013 05:30 PM

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 01-24-2013 02:57 AM

Quote:

Originally Posted by Quandry (Post 950250)
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.).

alice md 01-24-2013 03:27 AM

Quote:

Originally Posted by AnnieB3 (Post 950235)
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

Annie,

Surprisingly, the role of IgG4 subclass antibodies has not been appreciated enough for many years, as they do not fix complement and do not lead to destruction. The understanding that antibodies can exert their effect by internalization and blocking of essential cellular pathways is relatively recent.

Even more so the understanding that this can lead to a much more severe (and not milder) course of the disease.

Quandry 01-24-2013 11:17 AM

Quote:

Originally Posted by alice md (Post 950383)
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.).

The mistake ER made with me was to send me home with Albuterol twice when my neck was weak, I could barely walk, and when I couldn't breathe. I tried the Albuterol and it didn't help. I don't have asthma. When my breathing issue is a problem it feels as though all the muscle in my upper chest are smashing my diaphragm. My upper back muscles are so weak they just hang at times and my upper arms feel like dead meat. The Mestinon is working for my breathing but not for other muscles. I just had an xray of the lumbar with a few vertebrae into my thoracic area because the weight of my upper body has caused problems with my spine. I can't lift anything or else all the air is expelled as if I was punched in the stomach and afterwards I can't stand straight without lifting my upper body with my arms. My ribs feel like a lot of pressure is placed on them too. Sometimes it's hard to even hold my head up. I think if I could find something else to help the Mestinon my muscles might relieve the pressure on my diaphragm and spine. If I take any more Mestinon then my swallowing is an issue. Maybe I'll try taking a half pill more and see if it helps.

I don't hear people on here talking much about upper body weakness (especially in the upper back). I not only have the upper body weakness my thighs feel like lead weights.


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