Caving in :(
 

Well I called the Dr and agreed to go back on mestinon.. I went to the post office today and then to buy butter, well my vision got so bad I had to come home and send hubby out to the store. I am so ticked off right now. Not having taken the mestinon for over 17 years this is hard for me to admit I need it.

As those of you who know me I am super sensitive to medication and am scared to take it again but it is that or not be able to go out. If it doesn't work than I may even cave further and try the IV IG... heck I don't know.

Well thanks for letting me rant. :grouphug:

How frustrating, I don't blame you for being ticked off. Going backwards is hard and so is feeling out of control.

Maybe the mestinon will go okay for you. I hope so! Did you have problems 17 years ago?

Ally

Hi Joanmarie!
 

Oh sweetie, I am so sorry, but this is probably just a little "bump" in the road!:D
I bet you will be feeling great in no time!:D
I've never actually been in remission b/4, so I have no idea how it feels, but I'm sure you're really upset after 17 glorious years of it!:(
What does your doctor say about all of this? Did you have a thymoma?
How are YOU coping with this?
Please feel free to contact me ANYTIME if you need to talk...I am here for you!
Love,
Erin:hug:

Hey Joanmarie,

You just go ahead and rant all you want!:Demonstration:We are all in this together!

I'm sorry that your symptoms have returned this year. I can tell from your previous posts that you have fought this battle by trying alternatives to taking meds. Maybe alot has changed with your body and it can tolerate the Mestinon now. I will say a prayer for you tonight for that!:smileypray:

Remain hopeful that alot has changed for the better in 18 years. Wow that's a long time, I sure hope I can experience that after my surgery.

Just remember, we are here for you!:grouphug:

Hey Joan,

You rant all you want! I'm so sorry that the MG's rearing its ugly head again, but hopefully the other girls are right, and the mestinon wont be so bad this time...I wonder why, after so many years, it's come back? This disease is so crazy! Some people seem to get it AFTER having their thymus removed ('cause of a thymoma), and some people get rid of it after having the thymus removed...

All I hope is that you're feeling better very soon...My thoughts and prayers are with you...:hug:

P.S. Have they ever checked to see if your thymus has grown back?

Nicky

Joanmarie, I can only imagine what it's like to have to try a drug you haven't been on for awhile that might make you really sick. Maybe you could try the Mestinon syrup. That way, you could start out with a very small dose and work your way up. Maybe your body would get used to it better.

I know what you mean, most days I feel like a hermit. And crabby. ;)

I hope it all goes well. You need to feel better.

Annie

Joan Marie
 

Im with Annie on this one, the mestinon needs to be started very gradually so that your body can get used to it,

Im so sorry that your MG is starting to flare up again, it seems so unfair.

Hang in there and you rant away!

Love
Rach

Hi Joanmarie,

how frustrating for you to be having to take mestinon!!!! I hope it works for you and doesn't give you too many side effects
take care
Kate

Joanmarie,
Sorry for the setback. Take care of yourself and keep a positive attitude. This will go a long way during your struggle! We are here for you, so rant all you want and we will be supportive!
Hugs,
Simon

Thank you everyone for your kind words :grouphug: I believe the reason it has come back is because last Oct I was sprayed with an ABC fire extinguiser and after breathing it into my lungs my body went crazy. As for the thymus returning that is possible as my thymus was spread throughout my chest and back then the Dr did say if he didn't get it all it could return. I have been in and out of the hospital alot since last Oct but I don't remember if they checked to see if thymus returned although I have had a chest cat-scan they were more interested in checking the lungs, I will have my Dr. look it over again. Once again, thank you for being here :grouphug:

Hey Joanmarie, so sorry to hear about this! I know it doesnt feel good to have to go back on Mestinon again, especially when you havent taken it in a while. I hope that it works for you this time round, and you'll feel better soon!

Dosage
 

I have always been really sensitive to most meds too - - and have to careful whenever I start something new since I'm never sure if I will have a reaction.

When I was given a 'test' dose of Mestinon the first time, I felt like I had drunk way too much wine! It took about a 1/2 hour to get rid of that feeling, but then I felt great!

Initially they said it was too bad I couldn't take Mestinon! I argued to try a lower dose ... and it has worked for three months now!!

I literally have two bottles -- one with 60 mg pills that I have quartered and one with 60mg that I have halved. I 'know' when I need which dose by how my body feels. And it's a bit of a pain to have to take the meds so frequently, but I have had NO side effects (and no 'wine' brain!).

For me, I feel like my body doesn't tolerate 'normal' doses of any drug - - I mean I only take one ADvil for a close to migrain headache! Maybe this would work for you,,,,hope so.

Sue

The Dr. put me on 60mg 4 times a day, {I used to take 120} but I did like Sue and broke it in half, it worked and well to be honest today I took a full tablet and it worked even better :) I forgot what it was like to look at something and not lose focus! I can tell when it is wearing off because my vision starts going bad and fast. The cramping is not so bad either :) I was so afraid it was going to be like before but since I am on such a low dose it is good :)

Thank you all again for the support! :grouphug:

Can your thymus grow back???

Stephanie,

Yes, it can from what I have read. Might take many years, but if some cells were left behind, it is possible. I have never read the per cenatages - - maybe some one here knows.

Sue

Hey Joan,

I'm so glad to hear that you're tolerating the mestinon well this time, and that it's helping with your symptoms! That's great news!:)

Nicky

Hi Joanmarie!
 

Oh Joanmarie! I am sooooo happy for you!:D

What fabulous news! :D

I have a sneaking suspicion that REMISSION is right around the corner for you!

Love,
Erin:hug:

I've heard a lot of people say yes, but I seriously doubt it... thymomas are very prone to recurrence though. If Thymus cells are left behind from a thymectomy, and you have cancer cells (thymoma) it is quite likely that they will grow back.

The thymus actually degrades to just fatty tissue (normally) shortly after puberty. We "lucky" few keep the thymus around longer than it is needed. I don't think it is actual Thymus tissue regrowing.

Of course, I could be very wrong... this is just my belief based on my understanding of the Thymus, thymomas, etc.

Hey Joan Marie,

I am so happy for you! I too am so sensitive to meds like you are and it was very brave of you to give it another try. Good for you. That constant double vision effects our lives in so many ways. It's very scary when it happens while driving...I keep a bottle in both of our cars and purse just to be sure.

On a different note...I had a pharmasists tell me to only cut a few of them in half at any one time, because they can loose their potency once they're cut. This is true with some other meds as well. Just thought I'd put that out there.

Hugs,
Pat

Hi Joan,
I am so glad that you decided to go ahead and try the mestinon again and that it is working for you! :)

So happy that the low-dose mestinon is working for you. :)

Hi Joan
Glad you are tolerating the Mestinon. I know you are glad.

Also to add about Mestinon, don't separate them out (like in a daily pill box) either. I actually was taking mine out and putting them in on of those weekly pill boxes for the week. I noticed that the mestinon was trying to crumble some and my pharmacist said that they need to be left in the pill bottle with one of those moisture thingy's (I'm pretty sure there is a fancier name for it). The pills can crumble to nothing so now I only count out for one day or two.!!

:)

Mestinon is very adversely effected by sunlight (pretty much light period) and moisture. The pills shoud be in an amber or opaque container in a cupboard out of the kitchen or bathroom. This is particularly important if you cut them for smaller dosages. The little devils just love to take on moisture and then crumble apart! I haven't put one of the moisture thingy's in (I don't know the fance name either!), but I think that's a great idea.

Sue

Thingy
 

Hey ladies, maybe if we ask the pharmacists for a couple of 'thingys', he or she will give them to us. Worth a try.;) Pat

Hey
Speaking of those "thingys" :wink:heehee! Since so many of us here can't work alot....let all MG'ers gather our resources together and invent and patent our own small size thingy to go in the pill day of week containers!
Think of how rich....:idea: we all can be!! Ha!

LOL about the "thingy" My husband gets them in one of his meds and I always kept them.. I don't know why but I did and now I use them with the mestinon. I have learned years ago about the moisture so I keep them in my bedroom dresser draw.

I'm glad to hear you all talk about the moisture problem with Mestinon. I kept wondering what I was doing with my pills to make them crumble!

Shar, I thought the same thing years ago. I put one in my jean pocket and when I went to take it, it was dissolved! Pat

I carry my mestinon around in a tiny pill container in my pocket, so as I remember to take the daytime ones. When I use to work, I would forget and only remeber when I was holding my head back so I could see. Keeping them in my pocket helped remind me.