Sorry you are felling so discouraged. I have been on Prednisone for 6 months, Mestinon for 7 months and Imuran for 4 months. It took about 2 months after I started the Imuran to see any improvement. I think you may just need to wait a little longer to see some change. I wish you the best of luck. Hang in there!! Hopefully you will see improvement soon!!!

Shannon, my doc says that it can be over a year to see benefit from the thymectomy! It's not immediate. So please don't lose hope! I had a thymectomy in July, and had sort of a terrible autumn and early winter, and just started feeling better at the beginning of this year--whether it's the surgery, or the IVIG, or the steroids that is helping, I don't know. All three probably. But stress can exacerbate your symptoms, too; emotional stress, or physical stress from the surgery. Also, my doc told me that it takes about eight weeks for Prednisone to reach maximun effectiveness, so it might still work for you. And evidently Imuran takes even longer, around 6 months to kick in.

Yes, you should ask about IVIG if you feel nothing else is working. At first I thought IVIG was only for very severe cases so I was afraid to ask about it, but then my doctor helped me see that it's just a routine necessary part of treatment. And you need something to get your symptoms under control while you're waiting months for all your other medications to kick in! I know this sucks, but try to be patient and relax, and give yourself time to recover. And until then, I'm here if you need to talk.

Vieve, when you say "under control" and that IVIG helps you get your symptoms under control, what symptoms do you experience still on a daily basis? How bad were your symptoms at one time or another?

I just cant even begin to explain the level of frustration this disease has caused me... although im sure you guys all get it. Today my dad said to me "so how you feeling brand new from the surgery?" its so hard to explain to people that the surgery wasnt a fix.... nor is it doing anything.

Also when did imuran begin to work for you?

& Prednisone has made me stronger... i do know that. But not as strong as i'd like to be. I still haven't gained back all my strength. But i guess since i do have some i should be thankful. Im just so ready to wake up from this awful dream.

I am so sorry to say...but it takes a long time to get better even with treatment.
I had them all within a 2 month period. and( Ivig and palsmapherisis during hospital stay when I couldn't move at all) and cellcept. and thymectomy and prednisone.
I felt better in about a year. I know it sounds like forever but you will get better.
Asking for IVIG would most likely just be too much.
It takes time.
So many times I would call my neuro because I wasn't getting as well as I thought I should. I thought the prednisone was making me worse. He insisted I hang in there.
It takes a year or so....I am sorry to say. I don't think you will see any change at this point with IVIG.

Hi Shannon,

I'm so sorry you're feeling low. It's a life changing thing that's happened to you.

I'm only on prediscone (and tapering down) but did have a thymectomy in May. Vieve is right - my surgeon told me it would be at least a year before they judge the success of the operation. I think I would say mine has been successful so far. I still have symptoms but not severe and I'm down from 75 pred to 20/15. How successful only time will tell but I am hopeful!

It's the time it takes that is so frustrating and depressing. Not knowing what's ahead is something we all probably struggle with.

I haven't had IVIG ( I'm in Australia and I don't know if that treatment is common here) but yes that might be something to discuss with your neuro.

Take care.

Gez

I was diagnosed this past April, and from then till my surgery in July and also at times after it, I was having significant generalized muscle weakness in my whole body, and quite a lot of trouble chewing and swallowing (such that I lost 20 pounds in about 4 months), and difficulty breathing. I was hospitalized for crisis and put on a ventilator for a week each in September and October. I've been having either plasmapheresis or IVIG regularly, and was put on a high dose of Prednisone, when I was released in October. My improvement has been like a flight of stairs: I get a little better then plateau as the IVIG wears off, then get another treatment, and feel even better than I did last month. I was having a little trouble chewing at the beginning of this year, then had IVIG right away, and since then the only symptoms I have are slight eyelid drooping, and some feeling of jaw fatigue if I eat a really big salad or something. Or tightness in the neck at the end of the day if I sit in front of the computer for too long. I haven't taken Mestinon since December. I'm tapering down from Prednisone now; and I just started taking Imuran last week, so it hasn't started working yet.

So, patience! I know. It's hard. And don't let people push you into doing too much before you're ready! You need plenty of time to rest.

Did you have a tumor?

Im so sorry to hear how bad your MG got Vieve. I have never had a crisis and i count my blessings every single day. I did not have a tumor on my thymus but vowed to have the thymectomy in hopes of possible remission or reduced symptoms?

I can honestly say if i get my health in order (MG controlled or remission) i wont waste a day. I guess the good thing about this disease is it really shows you how much you take advantage of good health.

I agree, MG is good in that it forced me to pare down to what was really important. I'm reminding myself to feel grateful every day. And also I find that I don't feel afraid of things as easily after my crisis, since now I know I can endure something that horrible happening to me!

Shannon, I hope that the surgery does induce a remission (for both of us)! You're so young, you shouldn't be feeling tired and weak all the time. But again, it really does take time. 6 months feels like a long time while it's happening, but later looking back on it it will just be a blip.

When did you get diagnosed? Are you at a place (with work and/or school) where you can have an easy schedule? I was lucky to be able to take months off after my surgery, and now I can work from home and have a flexible schedule, so my life is very un-stressful right now, and I think that's helping. But I know that's not the case for everyone.