Hey guys,

Alice had brought up something interesting in another thread re. anti-ryanodine antibodies...

Apparently, these antibodies are present in older folks with MG and about 50%of people with thymoma (whether old or young).

Another antibody that's present in older folks with MG and the thymoma people is anti-titin antibodies. These usually affect breathing muscles.

It's funny 'cause after I was diagnosed with MG, but before I found out about the thymoma (and I was still questioning my dx since I didn't have ocular sx and all that), I remember reading case studies and relating very much to the symptoms that the older folks experienced (one man had tongue atrophy).

So I'm just wondering if anyone has ever been tested for these antibodies and if they had them? I'm wondering if I should ask my neuro. about this because the treatments are different. I don't know if it's worth it to spend 6-months to a year on a drug that might not be strong enough to deal with these resistant antibodies if I have them.

I'm feeling like maybe I should just go straight to the really strong drug that actually works to combat them (like tacromilus/cyclosporine) even though the side-effects seem deadly (literally). I even wonder about chemotherapy. I joined a site on Facebook for thymoma people. The people who had to have chemo. and who also had MG were able to get rid of their MG for the most part.

I wonder if they had the 'regular' MG, and maybe the chemo. didn't necessarily affect their outcome, but rather the passing of time, and/or removing the thymoma/thymus did, or if the chemo. got rid of it even though they may have also had a 'resistant' sort of MG.

Has anyone heard of chemo. being effective for MG? I feel like it might be worth it to go through the torture for a little while in order to have a better life later.

P.S. Wanted to mention again how much I detest this disease.

Nicky

This is interesting...

For some reason, I was under the impression that only people with AChR antibodies would be positive for RyR antibodies, but it looks like 'seronegative' people (no Musk, no achr) can be positive for RyR antibodies as well...Maybe you seronegative guys can ask to be tested for this antibody...Since thymoma with MG is almost always positive for AchR, it would seem that those without a thymoma would also be positive for RyR...Whether these guys were older or not, it doesn't say...

It's also interesting that all the MuSk people were positive for RyR antibodies as well...

http://jnnp.bmj.com/content/76/5/714.abstract

Nickerd,

Good post, but I think I am done with testing, and medication and all the Dr's. LOL, I think I will just be greatful I had the remission I did and be content to take the mestinon and relax when weak

I think maybe if I hadn't had MG for so long I would be raring to go on more tests, but... I am just to tired.

OK, time to rinse the color out of my hair and watch Bones and Fringe..

Night All

Nicky, I haven't been doing well lately so I've not been on much. I've been giving this topic and Alice's post on steroids some thought though. Sorry, this may be long.

Years ago, I think most practicing neurologists "gave up" on MG. Since they labeled it the "most well-known autoimmune disease," I think they thought that meant there was nothing more to know. WRONG.

And like what has been said by so many here, there is a lot of information from old documents that has been forgotten. Specifically the details about the disease and how it affects patients. And to think that MG is the only thing that could possibly go wrong in the neuromuscular junction is simply illogical. Have you seen illustrations of the NMJ? It's quite complex.

There are some researchers out there, like Dr. Angela Vincent, who have not given up and realize that they discovered only the part of the MG iceberg - or should I say neuromuscular junction iceberg - sticking out of the water. MG is so different for everyone and I honestly believe that they will not only discover more antibodies but that they will figure out other "animals" that are similar to MG and will also have MG subclasses - like they do with MS.

Sometimes these more technical conversations aren't what people want to read about but they are very important. What if we, the patients, come up with ideas that neurologists and researchers - who don't have the disease - haven't thought of because they don't live it. These discussions are important; maybe not for everyone but for many. It can be hard to bring them up because so much is not known. It's a lot of speculating and many people like only concrete answers.

Artists, like me and so many others here, use both sides of the brain equally. We integrate left and right to come up with better solutions and faster. No, that's not an elitist statement because every single person is capable of doing that! Many people, unfortunately, are not taught how to be creative. If only doctors could do that more often.

What extreme left brain people tend to do is jump to judgment right away instead of looking at ALL of the facts. You could easily miss something when you do that. Sifting through a problem using both sides of the brain may make a lot of people uncomfortable. Why? Because it is fraught with failure and most people want to feel good. Failing, or criticism, doesn't exactly make people feel good. Failure/creativity is not about failing! It is about trying to find the best solution for a problem. You have to go through a lot of possibilities to get to that best one or ones. So you have to be willing to look stupid, not be taken seriously, be judged. Though you won't get that from other "whole brain" creative thinkers.

I used to work in creative fields and it was the most fun I've ever had. Working around people who love solving problems is the ultimate job for me. Wish I could still work. If only doctors could think of their jobs that way - they might actually have fun and get better at it. No offense meant, Alice!

I really believe that many neurologists tend to be extreme left brain thinkers. They are often control "freaks" who don't like anyone questioning them. They will say or do things that may upset you but they think it's "ok" because they say it is. They could care less what you think because they are arrogant and often narcissistic. They often come up with quick answers which may not be accurate and are not very good listeners. They will often stick with algorithms and not think outside that doctor box.

I don't often label people like that but when a group of doctors present themselves in this same way to me over and over again (with luckily a few awesome exceptions), I tend to believe that is how they truly are, at least as doctors.

So when people like you, Nicky, both need and want to spend the energy and time to look these things up and think about it all, we all need to say a HUGE thank you! Looking at MG honestly and with an open mind is absolutely needed. I only wish more doctors and researchers would do the same. I understand the need of the ego to feel good about itself but I also understand the importance of not settling on a "fact" that may be a "shape-shifter" as MG most likely is.

Doctors see themselves quite often as authority figures and they don't want to be seen as "wrong." Who does? But not having all the answers is not being wrong. What is wrong is blaming the patient for being sick or saying they are fine when a doctor can't immediately come up with any answer other than you must be depressed, anxious, have fibro, have chronic fatigue, are hysterical, it must be that time of the month or whatever ridiculous, illogical and fairy tale version of science they come up with to get them off the hook for not thinking or working harder.

There are hundreds of CMS mutations. There is the odd myasthenic - LEMS. There is MG in lots of different presentations. That's a big list already. I imagine there's more. Like me who only has modulating antibodies, which 3 - 4% of MGers do. Which could be only due to the Flovent I'm on or the IgG3 deficiency or whatever. Who knows. But there are a LOT of variables here that are not being thought about or pulled together. And what is the ultimate goal?!!!!! Listen up, neurologists. It is about HELPING the lives of people with these diseases, not furthering your careers or covering your tushies to keep from having a lawsuit.

Okay, that's enough from me, eh? Time for bed.

Hang in there, everyone.

Annie

Has anyone heard of chemo. being effective for MG? I feel like it might be worth it to go through the torture for a little while in order to have a better life later.

P.S. Wanted to mention again how much I detest this disease.

Nicky[/QUOTE]


Well, Rituxan, which I'm about to start getting, is a form of chemotherapy. It's the chemo used for lymphoma, but it has been showing some promise in treating MG as well, especially people who are MuSK positive. I'm seronegative, but the doc wants to try it anyway, so I'm going to do it. I'll let you know what happens!

Well, Rituxan, which I'm about to start getting, is a form of chemotherapy. It's the chemo used for lymphoma, but it has been showing some promise in treating MG as well, especially people who are MuSK positive. I'm seronegative, but the doc wants to try it anyway, so I'm going to do it. I'll let you know what happens![/QUOTE]

Rituxan is not chemotherapy, it is immunotherapy.

we used to treat patients with lymphoma with chemotherapy, but now it is almost the mainstay of treatment to give immunochemotherapy.

the word chemotherapy doesn't really mean much. as any chemical given as treatment can be considered chemotherapy, including antibiotics.

it just becme a word for those medications that were given fror cancer, caused a lot of horrible side effects, like nausea, hair loss, etc.

hopefully we are gradually able to make our treatments for cancer much more targeted, and much less toxic.

the short term side effect profile of Rituxan is much more like IVIG then "chemotherapy". and long term it is probably much less then steroids.

alice

Here's more info:

Information on Rituxan / rituximab / MabThera - a monoclonal antibody chemotherapy for Non-Hodgkin's Lymphoma.
http://www.lymphomainfo.net/therapy/...herapy/rituxan....

Side Effects
Patients may have adverse or severe reactions from Rituxan. For this reason, they should be closely monitored during drug administration, especially during the first dose. Also, live virus vaccinations should not be administered while a patient is being treated with Rituxan.

The most common side effects are infusion reactions, like fever, chills, and fatigue. Infection can also occur as a result of lymphopenia (the depletion of B-cells), which weakens the immune system. Some patients may suffer from more severe reactions than others.

Less common, but more severe symptoms include
Bowel Obstruction and Perforation: Minor to severe discomfort may be experienced after the administration of Rituxan. Patients should inform their doctor if this occurs.
Arrhythmias: Minor to severe heart problems can arise from the use of Rituxan.
Hepatitis B Reactivation: A patient previously infected with Hepatitis B may suffer from reactivation of the disease. This can lead to liver failure if left untreated.
Tumor Lysis Syndrome: This phenomenon occurs when cancerous cells are broken down, releasing harmful toxins into the blood. Renal damage or failure can occur when the kidneys try to filter out those toxins.
Severe Mucocutaneous Reactions: These skin reactions usually occur near the body’s orifices, like the lips. Reactions vary by patient, and can involve a minor skin lesion or more severe eruption.
Progressive Multifocal Leukoencephalopathy (PML): This rare and extremely severe disease is causes by the JC virus. It affects the brain and can prove fatal.
Symptoms can usually be reversed if treated early. Talk to your doctor immediately if you suffer from any symptoms while on Rituxan treatments.

have you ever read the warning lable on any of the commonly used antibiotics?

of course Rituximab can have serious side effects. any medication, including tylenol can.

and it has to be given by staff experienced in administering it properly, but this is true for IVIG as well.

in some patient there may be an acute hypersensitivity reaction with severe rigors, sometimes requiring administration of morphine to control. this is seen much more often in patients with lymphoma with bulky disease, and is thought to be the result of the acute formation of antigen-antibody complexes.

as I explained before, the word chemotherapy is basically semantic, but Rituximab is not considered chemotherapy but immunotherapy, and in patients with lymphoma is never given on its own, because it is not very effective, due to its relatively gentle mode of action.

this does not mean, that it is "fun" to get it,

and I hope that you will not experience any significant short or long term side effects.

what I would be concerned about is, the combination of rituximab with significant immunsupressive treatment. this can lead to more severe infectious complications, and I think should be taken into account when deciding on this treatment.

also, repeat treatments (eg- maintenence therapy) , are associated more with significant hypogamaglobulinemia, and serious infections, in lymphoma patients. (who also recieve chemotherapy, which can contribute), but is still a source of concern in autoimmune patients as well.

I personally decided to get as far away from my steroids, before recieving this treatment. but, in my case it's easy, because the steroids only made my illness worse, and should have been stopped long before.

alice

Didn't they used to use chest xrays to control MG ? I had so many as a teenager and my present Dr asked if that is what they were doing. I have no idea if it was still done in the 70s?

Hey Cowgirl,

Please keep us posted on your progress when you start getting the Rituximeb. I'm very interested to see how this helps you.

Good luck!
Nicky