Reply To: CIDP big relapse vs mini relapse?

November 7, 2017 at 11:50 pm

I am new to this forum, but have been involved in others. Diagnosed in 2015. Mayo Clinic saved my life. My treatment involves a combination of IVIG, Rituxin, CellCept, physical therapy, muscle relaxers, nerve block injections ((Botox) in my neck, back, cranial nerves, jaw, and shoulders. I’ve come very far in two years, but continue to relapse.

After two years and more than 60+ IVIG infusions, insurance has put their foot down. It’s been eleven weeks, but received a round of Rituxin (thank goodness for their amazing patient assistance) and that helped some.

To answer a few questions on this forum:
1. Stress will cause a relapse no matter how hard you try to prevent it. Your body may decline as you have experienced or you may have a whole new array of horror. Sorry. Keep your neuro informed to account for this factor.

2. IVIG has many brands. After several successful months with one, major reaction and was switched. Gammagard has been kind to me. We keep a consistent protocol – 2 Benedryl, 3 Tylenol, a bag of IV fluids, then IVIG slowly for me, then another bag of fluids. Ensure the lines are flushed because IVIG isn’t compatible with some IV fluids (serious rash lasts weeks when they screw up). As you get infusions pay attention to your body, when you feel uncomfortable- usually they are pushing it too fast and need to slow down.

3. Recovery. My first few months of IVIG were both heaven and hell. My body was healing and coming alive, but the nerve pain was torture. It passes.

4. Relapse. Truly hate that word. But, it’s inevitable for me. Following a low inflammation diet, maintaining activity, following my daily med regiment and still they come. Many of you aren’t like this, but it isn’t fun. Be grateful.

5. Support. This is crucial. We have an invisible disease and people just don’t understand. Be your own advocate especially with your healthcare providers. Each time you relapse or go without treatment it is possible you will lose parts of your functioning that you may never get back. Fight for yourself and a future you can look forward to living.