September 2005 - The IVIG took four to five hours each time. I listened to music and read. Carol was using the laptop to edit the Management textbook she wrote in Thailand for our students. I received 65 grams of Gamunex each day. After that the waiting began: Will it work for me? Two weeks later I noticed that walking seemed a bit easier and I was better able to navigate our granddaughter’s toys strewn all over the living room. We were spending three days a week in Denver baby sitting since our daughter Ryan, a first year M.D., was working 80 and more hours a week. Perhaps, this improvement was just my imagination, wishful thinking, I thought. A follow-up visit with Dr. Quan showed no change. Another IVIG on October 24 was scheduled.

October 2005 - All the lab results I requested from the hospital arrived early October. A special test performed at Washington University in St. Louis showed very high anti-MAG IgM, 140,000 with < 1500 being normal. I was very concerned. MAG stands for Myelin Associated Glycoprotein, a protein on the myelin sheath that was different from the one being damaged by regular CIDP. IgM are antibodies that attach to this protein initiating attack by the immune system. It looked like I had a different version of CIDP, a version that, according to my research, wasn’t as easily treatable with immuno-modulating or immuno -suppresive methods as was CIDP. IVIG consists mostly of IgG antibodies. I could not image that it would be very effective against IgM antibodies. But Dr. Quan still wanted me to continue the IVIG two more times. After that she was planning to try Rituxan, a chimeric murine/human antibody that attaches to the CD20 region of IgM antibodies. It is produced by Genentech. It is normally used for non-Hodgkin’s Lymphoma. I still don’t quite understand what CD20 does. Perhaps more research is called for. - By the way, murine means mouse. Chimera is a Greek mythological character, a fire-breathing monster made up of the front parts of a lion, the middle parts of a goat, and the tail of a snake. Rituxan is strange futuristic stuff, made billions of $ last year.

February 2006 - The IVIG only brought very small improvements as was to be expected. After an inconclusive bone scan, Dr. Quan referred me to Dr. Kolhouse, an oncologist/hemotologist. I never had that many blood tests done on me in my whole life. He ruled out any malignancies like Myeloma or Waldenstrom’s macroglobulinemia. He did find another autoimmune disease, a mild case of cold-agglutinine and minor monoclonal gammopathy of unknown significance (MGUS) in addition to the CIDP. He was, however, not willing to order the Rituxan I wanted and referred me back to Dr. Quan.

March 2006 - From Dr.Quan I learned that he did not want to order the Rituxan because of high cost and - this is my guess -the absence of any malignancy. We agreed on trying Prednisone, a steroid. Prednisone suppresses the immune system and in many cases has helped CIDP patients. According to my research it is not effective with antiMAG IgM neuropathy, which is the variant I have. I wanted to try it anyhow.

May 2006 - I started out with a very high dose of Prednisone, 60 mg. I was hyper, cranky (according to Carol, my wife) and was having trouble sleeping. Little was I prepared for the disaster that followed after two weeks. Several times a day very uncomfortable, almost painful electric shock-like sensations went up my legs all the way to my chest. I felt like choking. I lost control of my legs and was barely able to hold on to a wall or a chair to prevent myself from falling. I finally got a rollator which I called my “Ferrari”. It has hand brakes that can be locked, a seat for resting that is rated up to 250 lbs., more than enough for me, a basket for shopping, and it folds up very easily for storing in the car. My “Ferrari” makes me feel a lot more secure. I even use it around the house and our granddaughter Sydney loves to get a ride on it.

Dr. Quan told me to get off the Prednisone. It obviously was not a solution for me. Three weeks later the electric shocks and the muscle weakness were mostly gone. But overall the CIDP symptoms are worse than just a few weeks ago. My hands and arms are falling asleep frequently, the numbness in my finger tips has spread to the entire hand. I have to type with two fingers instead of all ten but still a lot of extra characters sneak in and I have to go back to make corrections.

Since yesterday I am back on IVIG. Maybe it will show better results this time but I am not very optimistic. I have a feeling Dr..Quan doesn’t quite know what to do with me.

August 2006 - Yesterday I finished this month’s IVIG treatment. This time the Gammunex, a 10% solution, was not available. Instead I received 5% Gammuguard which took 7 hours on each of the three days. Pretty boring! Again I had some minor flu-like symptoms afterwards. During the last three months to my great surprise I noticed more and more improvements. Now I only use my rollator for longer walks, for example around shopping centers or recently on a hike around a small lake in the Rocky Mountain National Park.

Is it possible that the IVIG can help me with my IVIG variant after all, at least a little? I feel quite encouraged right now. Yesterday to my great surprise I also noticed that the tremor in my hands has almost disappeared. Right away I tried to type with all fingers on the keyboard. It still doesn’t work. I do have some feeling left in my fingers but they are also still somewhat numb. Maybe I have to relearn how to type.

My next appointment with the neurologist is on August 8. I am hoping that she will continue me on IVIG since currently there is no alternative.

Still no word from the US Department of Labor. They had rejected my application to accept my CIDP as job related because there was no proof that it started in Thailand while in the Peace Corps. A few weeks ago I submitted an appeal for reconsideration. This time I included a sworn statement to the effect that the CIDP first started in Thailand and symptoms have worsened since then. Because of a change in insurance companies my co -pay jumped from zero to $1000 a year. If the DOL would accept my claim, they would pay all the costs. Being on Social Security, this certainly would help.

September 2006 - I completed another round of IVIG of 195 g of Gammunex September 8. Reactions were again relatively mild, just very minor flu-like symptoms. During the last week I was feeling a little worse, less secure walking. Now I am waiting to see if there is any improvement. Dr. Quan, my neurologist, agreed that I should start again on a low dose of Prednisone, 20 mg. I started with 5 mg and increased it to 10 after one week. I wanted to be careful after that disaster earlier this year. It didn’t take very long before I started getting jittery and feeling agitated. I reduced it again to 5 mg which made the side-effects more tolerable.

I just re-read an answer an immunologist posted some time again on the forum. Using “Threads”as her forum name, she used to participate frequently. She suggested that immunosuppressants like Prednisone might not be effective for my CIDP variant, antiMAG IgM neuropathy. Here is what she said: ”The point behind the immunology is that a whole different class of cells is involved with this condition than with typical CIDP. It is likely that T cells are out of the picture (and might even be helping), so steroids won’t work, along with cyclosporine and various other drugs that alter T cell function. The bottom line is that you want to target that B cell clone, and maybe clear out the auto antibodies in your blood. Hopefully, your Rituxan will be effective. I would put that as a first line drug for MGUS/antiMAG.”

I wonder if my neurologist is really aware of all this. Maybe I should quit the Prednisone again.