I wanted to bring this topic up for discussion. I have no idea how much any of you know about MG and remission. I want to clarify a few things just in case you don't have a lot of knowledge of it.

There are very few people who ever have all out drug-free remission. That means absolutely no drugs, not even Mestinon.

Then there is drug-induced remission by taking Mestinon, Pred, Imuran, Cellcept, Methotrexate, Prograf, IVIG, Plasmapheresis, etc. More people have this but definitely not everyone.

There are not a lot of large studies on this issue. There certainly are not studies that show whether a thymectomy alone (or with other drugs) can achieve remission all by itself, though I believe UNC is working on that.

I realize that there are people with MG who don't care how they get to remission as long as they get there. It can often take more than one drug, like a combo of Pred and Imuran for example, to get there. And that brings with it LOTS of side effects.

We all want a better quality of life, which really is the goal of any of these drugs (by making MG get better). Some of these drugs, however, come with their own impacts on health that can reduce your quality of life even if your MG symptoms are reduced or gone.

I am not saying that one way to treat MG is better than any other. That is up to you and your doctors. What I want to do is point out that remission, while awfully enticing, may come at an even greater cost to some people. So the goal shouldn't only be remission - at least for me - but to have the best quality of life you can.

False hope is not good. Hope balanced with knowledge and a good neurologist is better. And pulmonololgist and primary doctor and any other doctor you need. Again, at least in my opinion.

I wish all of you could have an all out, drug-free remission

Annie

Some of the many articles on the topic:

http://www3.interscience.wiley.com/j...TRY=1&SRETRY=0

http://content.karger.com/ProdukteDB...asp?Doi=114612

http://www.ingentaconnect.com/conten...00006/art00009

http://www.roche-trials.com/patient/...ts/stur33.html

MG and Drugs:

http://neuromuscular.wustl.edu/mtime/mgrx.html

Annie, Hi. I read your post and a few things come to mind. If I may ask, What diagnosis/diagnoses do you have?? MG I am assuming, yes?? Any others going on?? You know we tend to have a list of things.

what level of disability has MG placed you at?? What can you do/not do?? IE: how far can you walk?? How long can you read a book?? How long can you speak?? Can you cook/clean/ADLs??
Next question, yes I am to nosey I know but I like to get a handle on where folks are coming from in discussions, what medications and/or treatments are you on currently?? What have you tried in the past??
You never talk about yourself. You are such a tonic for so many. I am sure we'd all like to get a bit of a view of where you are coming from.
hugs

I'll keep that for another post, if you don't mind - want to keep this on-topic. I do talk about myself though, just not a lot. For example, I just talked about my dog having a tooth abscess. Thanks for asking.

Where am I coming from? I guess because I'm a daughter of two teachers and a teacher myself, that's what I like: knowledge.

Annie

I have had MG (seropositive) my entire life but only diagnosed in 2001. Might have CMS too - long story. Am only on Mestinon for a lot of reasons I'd rather not get into. I can't have the other drugs/treatments; at least not until it's an absolute necessity.

Hello all! I for one would be very, very happy with taking pred as long as I live as long as I feel good! My expectations of remission my be lower than others, but just the simple fact that there is a CHANCE for remission is enough for me!

I am not an ignorant smiling Pollyanna type, but I know that people have gone into remission! I also know that I suffer from acute MG, so a true remission prolly isn't in the cards for me, though once again I would be happy as long as I can take care of my fellas and myself.....

All of us hope for remission......some of us will achieve it, others won't There is no rhyme or reason with MG.

How do the rest of you feel? Would you be happy taking meds so long as you can feel like your old self? I am truly curious about this?

Hope this post finds you all strong and happy!

Love,
Erin

For my two cents worth, LOL.
All treatments medications therapies have risks that come with them. The risk/benefit ratio is something our docs have to play with every day of their practice. (called practice cause it is NOT an exact science, the medical community is always learning, always growing)
So with each thing you put in your body it is a crap shoot. There is the expected outcomes and then the issues that arise that are not helpful or even deleterious to us.
FYI: one side effect of tylenol??? a headache!! LOL how's that for an illustration??
We all have to work with our docs to get to a place whether it be remission or improved quality of life. To do this one must be willing to explore the options available to us. This is the whole reason we go to the docs. We can sit home and wring our hands and poor me and look at the negative POSSIBLE side effects and die or we can get off our butts and be aggressive in seeking that "magic mix" that is out there for each of us. For some who are lucky it means mestinon and nothing else. For others a touch of prednisone. Still others its an all out war.
Another thing we must remember, the side effects from most any treatment can be counteracted by another drug/treatment. Can be totally mitigated. Yes it means another pill, but do you want to get better or not?? Again comes down to sitting and wringing your hands or working and turning over every stone. Yes these treatments/drugs can possibly present other issues for us to deal with, but that is part of that risk/benefit game.
We have to remeember that the list of negatives is only that. A list. If ONE single person reports that they got a hang nail while taking aspirin then the PDR has to list it. Does that mean that if you take Aspirin you will get a hang nail?? Chances are much better that you will NOT than that you will. If Aspirin caused hangnails as a rule, they would have to pull it from the shelves I imagine or have a black box warning on it at least.
Medications and treatments are all those of us who are sick have.
My own regimen is daunting and semi effective, but without it, I am in resp failure.
IVIG 60G every monday
60mg pred qam
cyclo 200mg twice a day
mestinon 60mg 2po every 4 hours
mestinon ts 1 at bedtime
and one other that is being "tested" so will just say another pill each day
Drugs I have tried and failed:
Plasma exchanges weekly (worked well until blood count stopped recovering and became severely anemic and need transfusions about every 4 weeks or so.
Imuran, cell cept, prograf and one other I can't remember the name of, but it had to be compounded and was similar to what is used to poison birds.
My best advice, find a doc who you trust to lead the ship. Do what he/she recommends and deal with what happens if anything.
You will never know if you don't try!!
Some folks of course can't take some of the treatments due to a multiplicity of medical issues outside of the MG, I think that is what Annie was saying about herself in her quest for cure/remission/improved quality of life. And that is a whole nuther issue. So again, find a doc you trust. work with him/her and get the best possible treatments to get the best possible outcome.
hugs

Good Post Annie,

"I" was one of the rare few who went into a drug free remission, I was in remission for 17 years, I worked, I volunteered, I would ride my bike for 22 miles at a stretch, I walked and played and am thankful I did.

I came out of remission this past year due to inhaling some chemicals, I now just use mestinon as I too can't take the other meds.

I hate not being able to do the things I did before and I get "mad" at my MG but I am lucky in the fact that I can get up every morning, yes I get weak but I look at others here and I have to say I am doing good!

Thanks for the topic Annie and thanks Erin for asking about the rest of us.


I have mixed feelings about taking medication...I would rather live with a problem than take medication in most cases, but with MG I realized that there was no life without it. I take Mestinon 90 to 120 mg per day and it makes my life liveable (if I didn't work, 60 mg per day would be enough). I take vitamins (Vitamin B complex and vitamin E currently) and try to adjust my diet and lifestyle as needed.

I don't think a person can live a truly normal life with MG...although it may be possible to appear normal to others by taking medication (I think that is what doctors and medical websites mean by normal...only the surface appearance of normal) I suppose by this definition I usually live a "normal life" (laughing about this, there is no way my life is normal even if the doctor says so).

I don't even consider remission (although I would be happy to be in remission of course!) and refuse to take any stronger drugs than the minimum necessary for me to function.

I am currently very depressed about my situation and feel like my life is over (I think if I didn't have kids to take care of I would have no desire to live at all right now). I am sure I will learn to live with MG, but right now I have not. I know that feeling sad/angry/depressed is my body and mind telling me that I need to fix this situation, that I can no longer live a "normal life".

And I am fine not having a "normal life" and never being in remission, but I do want to have some good in my life. I am getting tired of using all my energy to work for money and having very little energy left for me or my kids or my family (forget about having a friend!).

I am currently very depressed about my situation and feel like my life is over (I think if I didn't have kids to take care of I would have no desire to live at all right now).

I know exactly how you feel. In fact I would even say that if it weren't for my kids chances are I wouldn't be here right now. At the end of the day, I always realized that I couldn't bring that kind of pain on my kids so I've made myself go on.

Still, I think with treatment (and I have been without a diagnosis or treatment for 8 years) things can improve dramatically for both of us. I'm a firm believer in the little things making life beautiful and worth living. Unfortunately, it's the little things - a walk in the woods (or desert ), lunch and a good laugh with a close friend, that are denied to us. Also, like everyone here, I love taking care of my family, I love the sense of accomplishment I get when I DO something - whether it's making cookies for my kids or getting a master's degree, it just feels so good. It's hard to try to find a way to live without all that. Sometimes of course I get to do those things, but too often not.

So, I understand what you're saying. I really do. I also have hope that your life will be better but - I know from years of pushing myself through this exhaustion and weakness trying to get a degree so I can get a job and take care of my family that you reach a point where you just can't do it anymore. And I am the queen of willpower! Sounds like you're pretty tough too. What I'm saying is that if you need to pursue disability, then do it. Don't take no for an answer until you've tried everything. I don't think people understand what agony it is for those who are sick to have to push through every single minute of every day. It's awful. Do what you have to do to stay sane, and take whatever medications can help you (within your comfort zone). Don't give up, people do get better, people do get disability, people do get help.

Ally

Hi Annie

First thing I would like to say is...

Thank you so much for this post...very educational especially to a newbie like me. There is alot of knowledge on these boards and I appreciate your efforts here.

I clicked on the last link for the MG & drug information...That was very educational to me. I hear alot of people on here talk about all kinds of meds and this really helped me to understand what each one does for our ongoing battle with MG.



One thing is for sure, this disease is strange!....It treats each person different for sure.

Have a blessed day!
JJ

Erin, I doubt anyone would ever think you are a Pollyanna type! I for one think you are a very positive person, even with all you have going on.

JJ, Thanks. I think this is one topic that isn't talked about too much by doctors. Probably because there are no easy answers. Everyone reacts differently, just like you said.

My quality of life right now is in the toilet but not as much because of MG (though that has a big impact) but because of having bad PVC's every time I exert; even bending over. I won't do cardiac ablation because it's dangerous and I won't take the drug that has killed like 250,000 people. So I have to accept this quality of life for the moment. There you go, Deb, a little bit of sharing. It's very hard for me to talk about because it makes me so damn angry. All this because of a stupid, generic birth control pill, switched from a brand name by my pharmacy, that caused a high BP.

That helps.

Annie