[Katrina]

I have been reading all your postings for about a month now but felt very funny about going on myself but I feel we all have alot to learn from each other, and it also reminds me I am not alone. I have had MG for 19 years now, and yes remission does occur I was in remission for 10years or least off of medication for that amount of time.

Around a year and half ago I started having vision problems followed by facial and eye droop, general weakness, lose of voice and breathing problems. I have been in 3 crisis situations since April but lucky for me no vent.

I currently take 40 mg of prednisone daily, Imuran 150mg daily, Mestinion around 3x daily,pepcid 20mg and throw in some vitamins for good measure. I also have to go for plasmapheresis 3x a week and now after one of those treatments I get 1000mg of solumedrol, talk about feeling like the Pillsbury dough boy.

I never imagined I would be facing this "nightmare" again, but it's back and yes I am angry but I keep going and try not to let anger win. I continue to work as much as FT hours some weeks. I have a wonderful husband and 4 great kids and do have the support of family and friends. I still though hate to rely on others and want to do the most for myself. I don't like not being able to plan anything since you never know how you are going to feel. AND PREDNISONE JUST STINKS.LOL

I will be getting my 3 round of Rituxan in Sept, and I have noticed no one else has made any postings in regards to getting this treatment. What are your doctors views on this?

Finding the right doctors is a definite plus, there is to many of us not getting proper treatment and definitely to many being told it's in your head. I am so glad I have the proper care now. I can only tell you that there is more treatment now than doctors were doing 19 years ago.

I hope you all have a better day and this posting works since it's my 2nd attempt and now I am tired.

[Hockey]

Dear Katrina,

My health problem is different than yours, but I do understand how tiring it can be to write a post. Still, I think it is worth the effort.

Speaking of effort, don't put yourself through extra work and strain trying to make each post "perfect. Just say what you feel, anyway you like without worrying about what your high school grammar teacher would have to say about it. People are here to support you - not to judge you.

Keep it coming.

[maryec]

Hi Katrina !
I know what you mean with the IV Pred., I have to have it to tolerate my IVIG. Gives me an enormous amount of energy though ! Short lived though, but it's nice to have the break. Hope you enjoy the forum, & meet some new buddies !
Mary

[Joanmarie63]

Katrina, Welcome to the best MG place on the net, we all vent and express joy here and we all understand! You are right in the fact that they have come a long way since we have been DXed. {18 yrs for me} I had been in med free remission for 17 years so it is an adjustment to be "out" again. I don't take any meds due to reactions and have never heard of "Rituxan" what is it? Is it like IVIG? Well, once again welcome to our "family"

[suev]

Welcome Katrina!

So glad you posted! I'm sorry your remission didn't stay permanently. Sounds like your neuro is as determined as you to get your MG back into remission! I hope it happens soon for you. Have not heard of Rituxan for MG - - do you know if it is 'off-label'?

Sue

[motorhead]

hi katrina,
i'm relatively new to the whole mg thing. this place is great to learn from others that have had to deal with it for years.

here's the wiki on rituxan. yes, off list.
http://en.wikipedia.org/wiki/Rituxan

[Pat 110]

Hi Katrina,

Welcome to the forum! Sorry to hear your MG reared it's ugly head again. Did you have a thymectomy that put you in remission? Sounds like you have a good neuro and treatment. I've heard of that med, but I don't anything about it. Thanks for posting and hope to hear from you more. Take care.

Hugs,
Pat

[Shari_W]

Hi Katrina,

I'm sorry you have had a set back after so many years of remission.

I've had MG for 14 years. The first 6 years I had a crappy Neuro who treated me terribly and then for some reason I went into about a four year drug free remission. It sure was wonderful during that time!Just when you think you have the little booger beat, it sneaks up on you again! My MG resurfaced in full force about four years ago and I am now on Social Security Disability.

I have a WONDERFUL neurologist now and we are debating about putting me on Prednisone. I am trying to do everything in my power to avoid it if at all possible but the last couple of months have been pretty bad for me. I haven't been in contact with anyone who has tried the Rituxan therapy.

I wish you all the best in your treatment plan. When it gets really bad for me, I think about my remission and say to myself, it happened before and it can happen again.

Take Care.

[SharS]

Welcome to the forum. I've never posted or been on a forum before either, but this is a tremendous group of people on here who are very kind and willing to share. It's been such a help to me and I hope I've been a help to some.

I'm sorry you're struggling again after doing so well for a time. I've never heard of the med you mentioned either. I take Mestinon 4xday and sustained release Mestinon 1xnight. Also, 2000mg CellCept daily and IVIG once or twice per week. I can't take prednisone due to blood pressure issues, but I felt better when I did. I had to go on disability this past April.

It sounds like you do have a great neuro who will do his best to help you get better again. In the meantime, try not to be hard on yourself and get the rest you need.

Take care,

[Tbarney]

Welcome and thanks for sharing your story.