Reply To: For those who get regular IVIG infusions, how often do you get them?
First off… I don’t think you are “weird”. All of us that have CIDP or any peripheral neuropathy have strange symptoms that we never had before in our lives. Some of us can have similar symptoms or different one’s all together. Thus, as you probably know, no two people with CIDP have the exact same symptoms and most likely don’t respond to treatments in the exact same ways.
My symptoms are somewhat similar to yours. Before IVIG I had numbness from my knees down to my toes and elbow down to my fingertips to various degrees. Pricking/stabbing pains were the norm… along with the occasional feeling like someone had a pair of pliers and was squeezing as hard as they can on various parts of my arms/hands, legs/feet. Gabapentin has really helped me with the pain. Like you, I take 1800mg a day (600mg three times a day).
When all this first started, I was working as a technical Lead system programmer for a major insurance company. I had worked in this field for 30 years and to toot my own horn… I was really good at it. But when this disease hit me (and at first I didn’t know what was wrong with me)… I noticed the numbness and gait issues, but worse of all was that I felt major fatigue after only working for a few of hours. I became weaker and my hands started trembling. My thought process began to suffer. I couldn’t think straight and multi-task the way I use to. In fact, it was awful because I always prided myself in my multi-tasking abilities and helping my team to obtain their goals and professional growth. Eventually, I had to stop working. Not because I wanted to, but because I needed to. I wasn’t doing the job well and I certainly wasn’t much help to my team. I struggled with the decision to leave… to me… it was admitting I was no longer the same person I use to be. But leaving, ended up being the right decision for me… for I had to take care of myself now. I can’t take care of others if I don’t take care of myself.
This response is long enough so I won’t go into all my initial treatments the first year of diagnosis, but I will give you a brief description of what my treatment is now…
I now take IVIG every 3 weeks (one treatment). I initially started with a loading dose of 4 days in a row and then went to once every 3 weeks. I get an injection of Solu-Medrol prior to each infusion. For me, I noticed some improvement in my balance and reduced numbness in my feet and hands. I have been on the 3 week treatment for 6 months now. I feel I am making progress but it is SO S L O W ! ! ! ! I would say my improvement is about 1-2 percent a month and now am about 75% like you. I still have times that I regress. I attribute most of my bad times from me overdoing things and not getting the rest that I need (but not always). If I push myself too far one day, I pay the price for it by being ‘down’ for several days afterwards.
To be totally honest, I’m not sure if IVIG will ever get me back to 100%. I sort of have my doubts as I am in my upper 50’s and have been taking some form of treatments for 2 years now. But I can say that I stopped all treatments for about 2 months (because I moved out of state). I saw no major difference the first month and a half, but then I quickly starting going down hill to where it was extremely difficult to walk with my cane. But my current IVIG regiment got me back to the 75%. Morale to story… for me, if I stop IVIG I get worse. I “maintain” and slightly improve with IVIG. A year from now.. I hope I am much better, but if I’m still at 75% then I will at least have to be glad that I didn’t get worse.
One last thing, you talk about IVIG side-effects. For me, my first night after IVIG, I can’t sleep. I believe this is due to the Solu-Medrol. I feel wired and hungry all the time. The next day as the Solu-Medrol wears off, I begin to feel tired but still can’t sleep. Basically the first 48 hours after my treatments, I may sleep a total of 5-6 hours. I also have GI problems after IVIG. All in all, it takes me about 5 days to feel back to ‘my normal’ after IVIG. My CIDP life is sort of like a rollercoaster. Every 3 weeks (between treatments), I have 1-2 ‘high’ days where I feel really good (like 80-85% normal) and I have a few ‘low’ days where I can hardly walk at all or am just totally exhausted. The rest of the days I am either moving up to the ‘high’ days or moving down the rollercoaster toward the ‘low’ days. I usually start seeing improvements 7-10 days after my IVIG treatment. Some people see it sooner. For me it is usually closer to 10 days.
I am so sorry for this long winded response. I hope in some way it may have helped you to some small degree. I sincerely wish you the very best. If you have other questions/concerns please post back.