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

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

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

Annie, hun, don't let it get you angry!! We are all here to lean on one another!! To share and perhaps lighten our mental load by sharing. Many of us have other medical issues too. Perhaps someone here has a similar issue and would be able to share his/her experiences with us so we can all shore up our fellow "groupies" here when they are down. So come here and share your frustrations/struggles/successes with us. It is not fair for you to be such a staunch supporter of us and you not get any!!
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!

Joan, half the battle is our attitudes!! We have to be our own cheerleaders. We have to get up and say ya know what my legs stink today, but I still have them and tomorrow they may be better. I am thankful each day I am here is another day I can see my kids grown up.
I can't walk anymore, well to a bsc is all with much effort. But I can get around in my electric wheelchair. I am working on getting a very nice fancy one now. Someone asked me how I could stand it. Simple, it is either that or I don't get to go out and play!! LOL Without wheels I am relegated to the bed. Without wheels I can't even get a cold soda outta the fridge for myself. Without wheels I have NO independence. My arms have other issues now so I can't use the left one to use my walker anymore.
Adapt or give up. Keep finding that reason to get up each day. Keep looking at the glass as half full. No I too am not a pollyanna. I have a full and sometimes horrifying grasp of reality with regards to my health and what my body is doing..............I just choose to take the huge lemons and make gallons of lemonaide!! LOL
Great attitude girl!!
hugs