I have been taking my new medication for nearly 2 weeks so a couple of days ago I bumped from 500mg to 1000mg which is the plan to keep me at unless I find I need to increase again. I have had no ill effects from the new medication in a few months I can start to try and back off of some other medications.  The new medication I’m taking is Cellcept which is designed to help kidney transplant patients accept the new kidney easier but I guess is there is also research to show it can change the course of Lupus and MCTD. There are a lot of unknowns but I’m willing to try if it means taking care of the disease and not just fixing the symptoms which I have been doing for 13 years.  It is an immune suppressant so it means that my once super human immune system is even more compromised and I can pick up every common cold or flu bug like everyone else now.  For 13 years I didn’t worry about getting sick because my immune system was on overdrive.  The problem with an overdrive immune system is that it doesn’t know when to quiet down again and therefore I would end up in flare.  Today I’m at 278 days without a flare and if I do flare I will need to stop taking Cellcept until it is over and then I can start again.  Also, I understand that if I do get sick I will need to stop taking the Cellcept until I’m better which means I will likely flare but I will cross that bridge when I get there.  The hope is that I can change the course of the disease and put the flares behind me.  I live in a world now of when will I flare not if.  Going forward it is likely that might change to if I flare which I’m excited to see happen.

Every day I wake up I feel like I’m testing the waters for that day and trying new things.  Being flare-up free and doing so much yoga and meditation it is helping me put a new life into perspective. I am looking forward to a new future.


  1. jodiebodie April 28, 2016 at 1:03 pm Reply

    Such amazing news. Good luck and I wish you very well on this adventure. Fingers crossed you can truly start a new life without flares! 🙂

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