4 years post-reboot report
 

Hi everyone,

Sunday marked the 4th anniversary of the completion of my immune system reboot aka high dose Cytoxan/HiCy/Revimmune. I thought I'd share an update.

In general, I'm still doing well. The last year has seen some increased symptoms, mostly ocular, but they are not as severe and they respond to the medications better than before the reboot. The last few months have been noticeably harder, but then I've also had some stressful stuff going on (death of one parent, assuming total responsibility for the other). In all, I'd say I'm still 75% better than I was prior to the reboot. I'm still VERY happy I did it.

In February, I began using Hizentra instead of Gamunex/IVIG. The Hizentra allows me to be independent with administration, as my doctors suddenly were uncomfortable with me self-infusing IVIG after 12 years of me doing so without incident. I did not want a nurse (babysitter) in my home every few weeks, so I switched.

Hizentra seems comparable to IVIG. I've had no real problems with it. I think it could really be useful to a lot with MG who don't like leaving their homes and sitting in an infusion center or for whom insurance doesn't pay for home health. In some, the side effects are less with Hizentra, but I haven't noticed a difference. The cost is the same, by the way.

Hope this is useful to someone! Have a good winter everyone!

Hi 4-eyes - thanks for the update - nice to know the reboot did quite a bit of good! I'm doing pretty well also and it has been about 18 months since my last Cytoxan infusion. I'm glad I did it too. I'll have to check into Hizentra since I'm not familiar with it - always have to stay on top of new treatments or therapies since we never know when what is working for us now stops working. I've had mg for about 14 years now and had to change therapies a couple of times. But, I'm doing pretty well right now. Of course, I'm not working (on disability) and that helps, but I can keep up with my 8 year old granddaughter 3 days a week after school and I'm pretty pleased with that!

Hope things continue to get better for you.

Juanita

That's great! I hope things keep going well for you.

Annie