Not the news I wanted from Neuro appt.
 

Hi All,
I went back to see my neurologist today. He is concerned about my continued symptoms and feels that it is time to be more aggressive w/ my treatment. He believes that mestinon alone is not effective. I went for blood tests, & if it all comes back ok, he will schedule me for IVIG treatments. Has anyone experienced this? Did it help? Side effects? I am very down tonight. I will be ok, & I will face this with courage and determination, but right now I am not there. I am scared, upset, and frustrated. I just don't want to put my husband, or my 2 young boys through anymore! Any insight would be welcomed and appreciated!!!
Thanks,
Nancy Lee

Hi Nancy Lee,
I'm sorry Mestinon alone isn't working for you! I experienced the same this past year. I had been on Mestinon alone for about three years and then my symptoms started to worsen so my Neuro felt she needed to adjust my meds. Instead of going straight to IVig she put me on steriods and azathoprine. When that didn't help I went in for Ivig. I had no allergic reactions or any problems with the treatment, but I felt weaker for about four days after the treatment. I had to take almost two weeks of work (I kknow for some of you that's nothing, but it was a big deal for me). Once that initial period of weakness passed things started to really improve. Because so many medications and things were changed all at once I can't say what made the positive impact, but things have absolutely been better over the past month or so! There is light at the end of the tunnel!

I'm still taking steriods (currently trying to cut down on them - I'm taking 60 mg one day and 40 mg the other) and azathioprine (150 mg daily). I also still rely VERY heavily on my mestinon (60mg every 3hours). The Ivig treamtent itself was great, I spent a very relaxing five days in hospital chatting with other patients and just "chilling out". I hope this helps!

Good luck with everything!
~Kathy

Hi Nancy Lee,
Mestinon is like Aspirin, it cuts down the fever but doesn't cure the source of the problem.
IVIG might be effective in reducing the anti-bodies but 20 % of the patients do not react positively. When effective, the benefits last no more than 6 weeks.
Once again, the cause of the anti-body production is not addressed.
I did not react to IVIG nor to plasmapheresis and my treatment consists of Mestinon, steroïds (Pred) and immunodepressor (Cellcept) and it started to really work after 5 to 6 months.
My present concern is a weakness in the legs which limits my ability to walk (one hour maximum at slow pace) but I recently started to swim again and I increase the distance every day without any problem.
Good luck and be patient!
Maurice.

I had IVIG but it did not work probably because I could not get a full course as I had a bad reaction (aspetic menigitis). It is very unusual and I have a lot of health issues as it is so I once I started to get the headaches, they did not treat me immediately as they should have and I had a near death experience. Unless you do not have adrenals like me, doubtful you will have the same experience but do be careful if you get headaches and feel bad during the infusions.

Kathy,
Thanks so much for your reply. I hope & pray that the IVIG treatments will help me. I am not a candidate for long-term steroid use (due to arthritis, my hysterectomy in 06, and the fact that I experience a lot of side effects, even when on 10mg for a short term) I will wait & see! Thanks Again!!
Nancy Lee

Maurice,
Thanks for taking the time to post a reply. I am struggling to be patient, it has really been difficult, but I will hang in there because it is what I have to do! Anyway, I am glad to hear that you are swimming and doing something you enjoy to take care of yourself. Thanks for sharing your knowledge & experiences w/ me!!!! Take care.
Nancy Lee

Thanks for your reply. Hearing the experiences of others, is helpful & will serve as a guide to me when asking questions, and doing research. I am concerned, and frustrated, but I know that I need to have faith. It is very difficult sometimes. Anyway, I appreciate your feedback.:)

Nancy Lee

wanted to see how the IV IG treamtments went
 

I am new to this site - in fact I started today - and read your blog. How did your IV IG turn out? Mine was AMAZING! I actually felt better almost immediately and was able to eat for the first time in a month! I had a thymectomy on April 22 and am looking forward to remission, though I am still on 60 mg. of steroids a day, as well as 420 mg of Mestinon, however my dosage will be reduced tomorrow..........I wish you all the best! I hope your IV IG treatment was as successful as mine! Good luck!:)

How did your IV IG treatment go?
 

Did you receive your IV IG treatments? For me they were a life saver. I had a "crisis" and was admitted to the ICU for 9 days, during which I had the IV IG, blood and steroids and it made me feel GREAT! I've heard of others who had side effects, but I didn't have ANY - the whole experience (other than being scared out of my mind) was great and truly saved my life. I'm new to this site and to MG, so when I came across this site it was wonderful - FINALLY someone who is experiencing the same things - someone who can relate :D. After reading some of these posts, it makes me realize just how important it is to actually have a doctor who cares, and it sounds like yours actually does.......How are you feeling now? Your kids? Hubby? I hope all is well........Let me know if you need anything or would just like to talk. I also recently had a thymectomy and hope to be in remission soon. I was diagnosed March 6th and went under the knife April 22nd - so fast it made my head spin! Take care! Erin