Reply To: CIDP big relapse vs mini relapse?

October 21, 2017 at 6:52 am

Thank the great powers that be for the Foundation website. In particular the Forum. I wonder how many uninformed Candidates there are out there stressed and struggling. Neurologists are not much help in this regard. Since I found this site I have been informing my Neurologist about the Foundation and any matters of interest. He is a good man and open to help.
In any event I am about to embark on my first IVig this Monday. Insurance, Humana, was a slam dunk approval. It will be 40mg of Previgen at home for five days and then 40mg one day every three weeks. Seems to me that this will be a lifelong process of taking the med. So what! Beats the alternative (if the ins. continues to pay)Until now I have been on Prednisone for over 4 years. Previgen has only been approved by the CDC for a couple of months but has been around for a while in other countries (of course). It is less harsh on the system, supposedly, but still has its potential side effects. Ya know, I took statins for years and now they suspect that may have contributed to my CIDP. There is not a shopping market full of choices. You start getting into maybe this or maybe that or a combination of the two. Most importantly get a Neuro that has as much experience as possible. Not easy! I am pretty fed up and hope the IVig will turn things around. I have lost some of my leg strength, but hope to salvage what is left. I can get around a bit but the pain in the feet and legs starts in about ½ hour.
As an aside I attended a Chapter Meeting in Atlanta a week ago. It was a fantastic learning experience and a chance to meet other CIDP and GBS patients. I strongly suggested keeping your radar tuned for one near you.
Good Luck to you. Each of us has to fight our personal physical demons defined under the same umbrella.
The volunteers cannot get enough accolades for the work they do !!!!!