[Joanmarie63]

Hello everyone, I hope you are all having a strong day. I was DXed in 1991 and been in remission since 1992. I was sprayed with a fire ext. in Oct 2008 and since then my MG has returned. I also am Alpha-1 deficient and it seems any medications I take I react badly to. I don't take anything now other then synthroid and xanax both of which I have to take at night so I can "sleep" through the side effects. Does anyone else have trouble with taking meds?

[maryec]

I am alergic to my IVIG, although they fix it by giving IV Pred. before I get it. With MG there is a boat load of drugs you shouldn't take, they can stop the effect of the mestinon, & cause muscles to weaken. Even a long list of antibiotics ! I haven't been able to drink alch. for years, due to reaction in swaollowing & breathing.
Mary

[Joanmarie63]

Doctors won't even try IVIG with me due to my severe reactions, I can't take prednisone unless in the hospital. Don't get me wrong I have many good days but when the bad days hit I wish I could take mestinon, instead I just "veg out" Thankfully my boys are grown now and I was blessed enough to have been in remission while they were growing up. Just have to get used to having MG all over again. I have gone from working and volunteering, riding my bike and bowling to doing nothing, boy what an adjustment. On the bright side I am alive and having a loving supportive family.

[maryec]

I think with MG it is one big adjustment, hourly, in fact. I am so sorry you have bad reactions to so many drugs, to treat your MG Joanmarie ! I am thankful also my boys are grown also. I got to do a lot with them when they were young, I am so thankful for that !
Mary

[erinhermes]

Hey there and welcome to neurotalk! I have to say your attitude is AMAZING! I don't now how you do it, but I respect the heck out of it!

I haven't had any allergi reactions per se. All I have ever suffered from are the side effects of prednisone - then again I am new to this whole MG thing - dx'ed a yr ago - thymectomy a year ago

Anyway, I just wanted to say hello and welcome and you are going to love it here!

Erin

Originally Posted by Joanmarie63

Doctors won't even try IVIG with me due to my severe reactions, I can't take prednisone unless in the hospital. Don't get me wrong I have many good days but when the bad days hit I wish I could take mestinon, instead I just "veg out" Thankfully my boys are grown now and I was blessed enough to have been in remission while they were growing up. Just have to get used to having MG all over again. I have gone from working and volunteering, riding my bike and bowling to doing nothing, boy what an adjustment. On the bright side I am alive and having a loving supportive family.

[AnnieB3]

Joanmarie, I'm sorry you are going through so much.

Do you mean Alpha-1 antitrypsin deficiency? Have your doctors explained what effect that has on the liver (and lungs)? It may be that you are not technically "allergic" to drugs but that drugs are not sufficiently metabolized by your liver. Do you get hives and other symptoms of an allergic reaction? Have your docs suggested anything you can do to help your liver? Would milk thistle help or would that not get metabolized either? Obviously you can't take anything without talking to your doctors first. What about taking enzymes?

Have you spoken to a metabolic expert? An allergist or immunologist?

Have you tried drinking coffee? I know it's not a sufficient replacement for Mestinon but caffeine is a cholinesterase inhibitor just like Mestinon. Maybe it would help a bit on those tough days.

It is a huge adjustment to go from "normal" to MG. The hardest part for me was adjusting the expectations of myself. I'm not a sit at home type of person either.

I hope you can find a way to deal with this stupid disease. And the other genetic one you have.

Annie

[ras1256]

Hi Joanmarie, and welcome to our little group!

I'm so sorry that one little incident has pulled you out of a beautiful remission! It is really hard to readjust after being in remission - mine was only one year of bliss, but it was awesome! I bet it feels like being first dx'd all over again. It's such a shame you are unable to take the meds!

Annie mentioned coffee, and I have to tell you I believe I was self medicating with coffee for years before I finally got too bad to mask it. I drank (now too) it all day, every day and I do believe that's what got me through! I still use lots of cream and sugar because like I always said - I drink it for the effect not the taste!

I hope you are able to rest yourself out of this bout soon. I'm currently in the "do nothing but sit around the house" mode again myself and it BITES! My husband tries to keep up with the cleaning, but I walk through thinking "as soon as I'm strong enough, I'm gonna get that cleaned right!" I'd never tell him that though, poor baby is dealing with as much as he possibly can now.

Nice to meet you. I hope some of Annie's suggestions might be an answer for you. She's very good, as you'll find out!

Hugs and best wishes!

[Joanmarie63]

Yes I do have Alpha-1 antitrypsin deficiency, and having MG my Dr. is using me in his study, big bonus for him, don't think so much for me but hey if the treatment he wants to try helps someone down the road, then what the heck so I am going for it. You are correct on the coffee, I too drink it all the time, so strong that my husband has his own coffee maker..LOL Annie, yes, I get hives and other reactions, to be honest, even when I eat I break out in hives, so needless to say, I don't eat much anymore. Feeling good today I think I will work on my book while I have the energy

[maryec]

I love my coffee also, soothing energy, Love it !

[momma3love]

I have a list of meds I am allergic to besides the list to avoid because of MG. I am allergic to two that have a very rare occurence of allergic reactions. I also have trouble taking Mestinon. For me it causes really bad migraines. So I have to stop and start a lot because of this problem. I feel very bad for you and I understand a little how you feel. Right now I have reoccurring UTIs and have two antibiotics I can take. So it can be very difficult to manage it all. I have 3 boys that are of school age and have many days that I have to sit.

I love your attitude. I think much of us find it is neccessary or we go crazy right. I know I do. I really hope you feel better soon.