Six month reboot update.
 

Hi everyone,

This week marks six months since I had my immune system reboot--aka HiCy, Revimmune, Immunoablative therapy. I can't believe how time has flown.

I am still basically symptom free. I have the slightest weakness in my facial muscles and eyes, which is likely permanent due to the relentless assault on the acetylcholine receptors for over a decade. Still, I am 100% functional. I go to the gym 5 days a week, work in the yard, drive anywhere and anytime I like, eat with ease (who knew it could be so easy?), swallow multiple large capsules of vitamins/meds with one small gulp. NIIICE.

I am still using MG meds--Cellcept, IVIG and pred, which I'm weaning (down to 7.5 mg eod). However, NOW they are working! My hair is about 1.5 inches long, and as curly as can be! After having straight hair all my life, I must say I'm loving the change and now my hair looks like an intentional short cut, instead of chemo hair.

Anyway, that's my update. I can easily say if/when I relapse again, I would not hesitate to repeat this treatment. Sure, it's 6 weeks or so of feeling pretty darn horrible sometimes; but the relief from symptoms has been worth every twinge of sickness.

Hope everyone has a healthy, strong spring!

Thank you for the update!!! We need more success stories here. I think that the natural thing when people get better is that MG stops being such a huge part of their lives--so they stop visiting this forum. It's natural. But it leaves visitors here with the impression that MG is universally devatating and incurable. So, I appreciate your update, and I'm so glad to hear you're doing so well!

Abby

I'm so happy for you! And thanks again for sharing your experience.