I have had Crohns Disease for 30 years and CIDP for three. IVig helped me in the past but I have always had very serious side effects. In July, I had my gallbladder removed and then had IVig the same week. I was very ill. My neuro said we would stop IVIg for a while. I stopped and felt pretty good for six weeks. I had lost 30 upounds but even started to eat again. My husband and I thought maybe I was in remission. Maybe I was misdiagnosed and never had CIDP at all. I was still recovering from the surgery so we couldn’t do much. Then, the numbness, burning and weakness came back. It came back with a vengence!
The nero started me back on IVIg but we knew I could not handle a loading dose of five days again so I was having 25G for two days. I got very sick so she added 50mg Solu Medrol iv prior to the infusions and this helped but the IVig was too low to beat back the symptoms. So she raised it to 30G for two days. Most of you know that isn’t a lot but during the second infusion, I had chest pain so bad I thought I would die. We slowed it down, I took more Benedryl and we were able to finish. As usual, I was extremely ill the next day and the chest pain returned. I went to the ER and when they ascertained I wasn’t having a heart attack, they sent me home. This is a trauma center and a hospital people from all over the world visit but they knew practically nothing about CIDP or IVig. The neuro resident was online looking up IVig side effects. Stopping IVig after my surgery is the biggest mistake I ever made because it stopped working. I should have told the doctor to find a way to lessen the side effects but I shouldn’t have stopped. Six months ago, my nurse and I were saying that I didn’t have any CIDP symptoms except maybe fatigue and if we could just stop the IVig side effects, I would be able to have a life again. Now, I am where I was three years ago when I was diagnosed, except I don’t have IVig to save me this time.
So now it has been six weeks since my last treatment. The doctor said I had two choices: switch brands and try a five day load up of IVig or try Methotrexate with 1,000 Solu Medrol until it kicks in…IF it kicks in. I started the Methotrexate today. I can barely feel my hands and can’t feel my feet. I am so week I don’t know how long I will be able to get up to my second floor bedroom. I am terrified and losing hope. This disease has taken everything I love away from me. For three years, I have been too sick to walk my dogs, go to dinner with my husband or enjoy even the simplest of life’s pleasures. What is the point of living with nothing to look forward to except getting worse. I hate this disease. I hate that instead of me having IT, IT has me.