[Ron]

Thanks so much. We’re hoping that these prayers from you and others and our good doctors will allow my wife and I to have more enjoyable years together. I am very grateful to be married to Karen for going on 52 years and other than her MG and several skin cancers, she’s been very healthy. And her MG has been completely controlled and I wish the same for you and all the others on this Forum who have MG.Happy holidays to you and them.

Ron

[Ron]

TO JQUEST:

Thanks so much for sharing your experience and in such a detailed way. I do hope you don’t have a thymoma. My wife had one and had the surgery to remove her thymus. Its been over 4 years and her MG has been 100% under control with both Cellcept (Myophenalate Motifil) and IVIG (Gamaguard) every 8 weeks and now she may be able to even stop the IVIG completely and just stay on the Cellcept. Unfortunately, just recently my wife was diagnosed with esophageal cancer at the GEJ junction and right now her prognosis is not good. However, she’s still undergoing tests and we’re hoping to get some better news going forward. Good luck to you on your MG journey.

[Ron]

Ari

Thank you for your reply. I’m so sorry you’ve had these very difficult medical issues to deal with.I really admire your strength and determination and I wish all the best for you and that you have no more serious medical or other issues.

Regards,

Ron

[Ron]

DRM:

Hi and thanks for your response. I’m not aware of any useful info about either IVIG or Cellcept but now my I’m wondering about both. Just recently my spouse who has MG was diagnosed with esophageal cancer at the GEJ junction. This is what is causing the swallowing issue I had mentioned. Because she doesn’t have the usual reasons for this diagnosis we’re now wondering if the Cellcept or IVIG could be the cause. Her Neurologist didn’t think so but said he may have other MG patients with cancer.We’re hoping this cancer can be surgically removed and hasn’t metastasized but won’t know until after more tests.I hope I’m wrong about these two MG treatments.

[Ron]

Hi Liz,

I’m really sorry you’re dealing with these problems. My spouse has MG and she’s been on Cellcept and IVIG for about 4 years. She’s been symptom free for most of this time and she will soon find out from her neurologist if she can completely stop the IVIG that she’s most recently been having every 8 weeks and just stay on the Cellcept, 1000mg twice daily. Recently she had a barium swallow which showed a possible obstruction at the Lower Esophageal Sphincter. She had this test because occasionally she feels the sensation of food moving down her esophagus–especially when eating fresh apples– but the food isn’t getting stuck. She’s now scheduled for an upper endoscopy to rule out cancer, etc. Some reading I’ve done indicates that MG can have various effects on the esophagus and I would like to hear from anyone who may have symptoms similar to the one described here. Also, I would like to hear from anyone that has stopped IVIG and is just on Cellcept or another medicine and is staying symptom free. Thanks and I hope everyone has a good day!

Ron

[Ron]

Hi Sharon,

I told my wife, Karen, what you’ve said here because she has MG and she stopped both Cellcept and IVIGs simultaniously. After about 5 months, her MG symptoms returned and she had to then start back on both treatments. But because the Cellcept takes quite a while to become effective , she then had to have 3 IVIG treatments over 9 weeks before her symptoms stopped. Recently, she’s decided she’s now going to just stop the IVIG very soon and stay on the Cellcept ( 2 pills twice daily) and see if her symptoms don’t return. If they do, she’ll restart the IVIG ( she had been doing that beginning every 3 weeks and then increasing to every 8 weeks.) If anyone else has had my wife’s experience or yours, it would be really helpful to hear from them. Good luck and thanks for sharing.

Regards,

Ron