Reply To: Taking Prednisone

Hi Mark – My neurologist prescribed prednisone for me 10 months after my diagnosis of CIDP(March 2016) along with IVIG every 4 weeks. Prior to prednisone I was given IV solumedrol which initially helped me regain some strength. I did the solumedrol while waiting for insurance to approve IVIG. I was in and out of the hospital three times while waiting for insurance approval of IVIG. Throw in a flu shot in the middle of all that which exacerbated the CIDP and in the hospital again. I had never had a flu shot before and was told it was important to get one because my immune system was suppressed. I will never ever get another flu shot!

I honestly feel that the combination of prednisone and IVIG are what keep me stable, and let me lead a fairly normal life. At my worst I was not able to walk, sit, stand etc. without help.

I started out on 80mg of prednisone every day. After 8 weeks I tapered to 80mg one day and 60mg the next. Then 80 – 40, then 80-20. Then 80mg every other day. I am currently at 25mg every other day. The goal is to be completely off in 4 months or so. I still get IVIG infusions every 4 weeks. It is my understanding that the taper of every other day gives your adrenal glands the chance to “wake up” and work again. If I can’t tolerate going off prednisone we will look at going on Cellcept.

Side effects for me are not horrible, but they are annoying. Not a lot of sleep, sweating, moon face, I gained around 20 pounds, and my “fat” sort of shifted to my belly. Boo! I watch my salt intake, and try to avoid sugar. I crave baked goods. I also had to get a bone density test. I try to at least walk 15 minutes a day with a hill involved if possible. For me my hips/legs are the first place that get weak when those pesky bad antibodies start to build up. I also try to do some weight bearing exercise. I was going to structured PT/OT, but I became exhausted and was falling down so I decided I would take what I learned and do it at home at my own pace. Your muscles will atrophy quicker than you think.

Best of luck to you. I hope my info helped you a little. Take Care.
Kathy