@Amigo - makes sense to me. I suspect much of the disagreement, or whatever it's called, is down to semantics and certainly on my part a lack of medical training. No doubt the Atlantic comes into play here as well! Certainly does with the form to join the MG Register. There wasn't anything in the initial 'must read' T&C to indicate a US bias but I couldn't get past the second page. I've asked the question of them - see what happens. This is definitely the way to go. Perhaps a coincidence but, only yesterday an Australian Billionaire started a world-wide register for cancer patients. Not that I have cancer, or at least not yet. I can appreciate that all such diseases, including our own MG will be sorted / cured at some point in the future.

Hi @Nanosecond, There is also another registry that people with rare diseases can join that supports research. You can find out more here:

http://www.sanfordresearch.org/SpecialPrograms/CoRDS/

@Amigo Snip Now my interpretation is that while the receptors cannot be repaired they do in fact regenerate. Not because they are repairing themselves but due to natural process our body goes through regardless of whether we have MG or not.

OK, I can understand that but, it does beg the obvious question. Does the natural regeneration of those receptors mean that the NMJ has been repaired to the point that it works in just the same way it did before MG came along to attack/destroy it? It is this point and the logical conclusion that results, that therefore all must be well that I question? I'm struggling with the concept that MG is reversible.

From what I understand it is a natural process for your body when your body regenerates antibodies or receptors's or skin cells or anything else if the mg goes away and there are no antibodies or receptors or whatever attacking your own body and your blood work turns out saying you have no longer mg that would be a a remission but it seems that some people have had this happen and then later it re-presents itself so does it really go away or is it just lie in wait for new opportunity it seems to me once you are inflicted with this disease it may go into a remission or you may be able to control it with the drugs but I don't not believe it ever entirely goes away

MG is caused by our immune system making bad antibodies. We don't know why it decides to do that. Sometimes it stops doing it and we go into remission. And maybe later it will start making them again and we come out of remission. It appears that we may have some genetic variation that makes our immune system more likely to respond incorrectly. Many of us have multiple conditions that are all classed as auto-immune (I have two others). Many of us can trace auto-immune diseases into our parents or grandparents too.
My own view of my personal condition is that my genetics are faulty and that my autoimmune diseases are really just a problematic immune system I inherited.
I got MG, like many men, in my older years (65). I had it bad for a time. Prednisone worked as it suppressed my immune system.
The one piece of the puzzle that I am not sure of is immune system connection to hormonal levels. As we all know, most women tend to get this young, often after puberty, and most men tend to get it as we age and our testosterone levels decrease.
In my own case, because I already had osteoporosis before MG, and with prednisone it got worse, I was tested for all of the possible contributors. I was found to have very low teststerone levels due to "primary hypogonadism." As I understand it, in my case my immune system was also destroying my testicles (autoimmune testicular atrophy is an autoimmune disease that attacks the testicles -- this was already happening prior to MG). Anyway, the treatment for that was testosterone replacement (and actually prescribed for osteoporosis as doctors seem to hate to give T prescriptions) and as I began that, I gradually tapered prednisone and was found to be in remission.
Asking my endocrinologist and neurologist is this cause effect, they said "probably not, but who knows." And I continue to take testosterone replacement, thyroid replacement and have been 5 years in MG remission. Is it cause effect? the only way I could know for sure is if MG does come back while I am on T replacement or if I stopped the replacement and waited to see. My doctors insist that is not a good idea, and I am so normal in health now at 71 that I don't want to try either. You can see me today helping my brothers split wood -- I am the biggest one. I added 20 lbs with prednisone and kept it! https://youtu.be/cNcpaMiL69A

@Rhanson - perhaps another reason why the MG Register has such obvious and great potential, All depends on the quality of the questions, along with the answers but I'm sure they'll sort that out OK - with the encouragement of your wood splitter if required!

This is an interesting thread. Bumping it up. I know remission OS very difficult with this condition. That being said, we do get them and they are sporadic. Some last for years, decades, but that is far and few between. I am on my way, because we have to believe it for it to happen!

@Ken 04/21/18

Snip - and your blood work turns out saying you have no longer mg that would be a remission

Just noticed this and wonder if this is the case? That the bloods test would or could come back to show no antibodies as being present? I suspect not, but if it were to be the case, perhaps it would prove to be a useful tool to prove the efficacy of the individual treatment? As far as I am aware there is no such test and that is one of the issues we face.

Tests of folks under treatment with prednisone have shown much lowered ACHR levels than at diagnosis. We certainly would expect that under immune system suppression treatment that would happen.

As to remission: I asked my neuro after I was in remission about having the antibody test to see if the antibodies were gone. She said "you will still show up positive even years later, just at a low level" That is why we are never considered cured, just have periods of remission.

Antibodies are a permanent part of our body. Once our body learns how to make a particular antibody, it remembers and continues to keep a few in circulation. They may drop to a level below the test sensitivity, but never disappear completely. If, for some reason, our immune system gets triggered to start producing them in large quantities, then remission goes away as the levels rise and the attack on our muscle receptors begins anew. As our immune system knows how to make the ACHR ones, it can get started rapidly and build up the levels quickly and MG can return abruptly.

Having been in remission for almost 6 years now, I am certainly one of the lucky folks. At age 72, I have some hope that MG will stay away for the rest of my life. However, having been through it from slow diagnosis, to hospitalization, to the 6 months of prednisone to climb out, I know that if it comes back, I expect to get it under control with the same meds as last time -- just will hit them harder earlier.

The only lasting damage I had from MG was not from the disease, but from prednisone and that was cataracts.

Good Luck
Russ

They don’t use antibody levels for levels of disease or remission. Not even in clinical trials. There is no correlation between level of antibody and disease. My levels are 70 and i currently have no symptoms. Doctor says there are other factors besides just antibody levels that affects severity of disease.
Receptors are dynamic proteins in your body they are internalized by your cells when they are old and new ones made. So yes they are regenerated whether you have MG or not. Most of damage in MG comes from complement being deposited at neuromuscular junction not just. Bad antibodies blocking the receptors. Solaris the most recent MG targeted therapy targets complement that’s why it works, doesn’t allow it to get deposited and mess up the junctions. Complement is component of blood.

It is true about the level of antibodies, but we could test to see if we had them or not. With regard to Soliris, that would only be used as a last resort here. Refractory MG only. One is almost guaranteed meningococcal disease taking that, even if they are vaccinated. Hey, depending on your situation, it could be a way to go, but I would do Rituxan for refractory and it would be safer choice. Rituxan is probably a good treatment for MG in general. Would be good to hear from folks taking Rituxan. Probably tough to get it prescribed unless one is refractory.

@ philomena50

Thanks for the explanation and indeed the reference to Soliris. The outline on their website of the mechanisms involved at the NMJ are detailed and fairly easily understood.