Early October 2007 - Life is full of surprises. I did not like the new neurologist at all. She only did a very superficial exam but she did order a new round of IVIG. She said she was going to double the dosage, however, when I got to the hospital it was the same as it always has been. I did see Dr. Romero, a hematologist/oncologist, here in Fort Collins. Funny guy, Italian, who seems to think out loud when he is processing something. But I liked him a lot. When he walked into the exam room the first thing I told him was that I wanted him to diagnose Waldenström’s and order Rituxan. Waldenström’s is non-Hodgkin's lymphoma which besides R/A is the only disease approved by the FDA for Rituxan. He seemed to be very willing to work with me and ordered a bone marrow biopsy the next day. When I saw him again after the results were in he diagnosed lymphoplasmacytic lymphoma and assured me that he did not want to upset me. Of course, I did not tell him how delighted I was to finally get the treatment I wanted. It wasn't quite Waldenström’s he said but when I later googled lymphoplasmacytic lymphoma, it was the same. Anyhow, on October 15 I will receive my first round of Rituxan and once a week for the next three weeks after that. This definitely will take care of the lymphoma or whatever there is. Whether it will help improve the symptoms of my anti-MAG IgM neuropathy remains to be seen. I've read about a number of success stories but there are also cases where it did not help at all.

   Dr. Romero also ordered a PET/CT scan of the entire body to see if there would be any metastasis. It came back negative but they did find multiple calcified gallstones and a small empty space in my brain, a left-over from the subdural hematoma. “You can still call me an airhead,” I told my family in an e-mail.

   I'm a bit anxious about the first infusion because there may be side effects caused by the foreign mouse antibody.

   P. S. My hands and fingers have gotten so numb that I now have to use a dictation program, Dragon Naturally Speaking. In spite of my German accent, it works fairly well. Some of its interpretations are very funny, but they are pretty easy to correct

Late October 2007- .The first Rituxan infusions at the Cancer Center of the Rockies went well. During the infusions I had no reaction at all. The first night I had a little bit of a temperature and very mild body aches. The second time there was nothing. I wished I knew what was going on inside my body. Are the Rituxan antibodies finding and eliminating the B-cells or is my immune system defending Itself against the foreign mouse proteins getting rid of them? It is difficult waiting for results. It may be weeks or perhaps even months before I’ll know if it worked. I just read that there is only a 50/50 chance for success. 

Early November 2007 - I finished the fourth and last of the Rituxan infusions on November 5th. There still was no reaction. The PICC line, a 45 cm catheter inserted in my upper arm extending all the way to the top of my heart has been removed and the opening is healing nicely. It sure made the infusions a lot easier since I am a “hard stick.” Dr. Romero, the oncologist, thinks it might be weeks or months before I see any improvements - if the Rituxan worked. He wants to repeat the infusions in 6 months and 2 more times after that.

Early December 2007 - There is no change in my symptoms yet except my tongue seems to be a little less numb. It is difficult to be patient. Sometimes I think it is not going to help at all. During my last visit my neurologist said she wanted me to get a power chair. Watching me with my rollator she felt that this was no longer safe for me. I have to admit that my symptoms have been getting worse over the past few months. My argument that I've been getting Rituxan and my situation might be getting better within the next few months did not convince anybody, especially not Carol. She feels frustrated that we can no longer do anything together. Okay, so I've finally agreed to look at them. It does seem easy to maneuver around with them.

Because of new Medicare regulations I had to see a doctor at a rehab clinic. After examining me she said that I definitely should have a power chair. I threw up my hands and gave up.

January 2008 - Still no change. Actually, my hands seem to be getting number but I have not given up hope yet. I compiled a chart with blood test results and a subjective evaluation of symptoms. The last set of numbers are encouraging.

January 22, 2008 - I finally received the missing results for the last blood tests. Anti-MAG IgM  dropped by 20%. This is the same percentage as all of the IgM. I'm trying to understand what this might mean. Rituxan removes B--cells and following treatment antibodies would get depleted slowly since no new ones are being produced. I expected this to happen faster since the half-life of antibodies is four to six weeks and it's been two months since I finished treatment. It is quite possible that the Rituxan did not remove all the B- cells and some of them are still producing antibodies.

Regardless, the fact that the overall number of IgM dropped by the same percentage as anti-MAG IgM seems to indicate that Rituxan got to the aberrant B-cells along with the good ones.

The numbers also mean that there are still 80% anti-MAG IgM in circulation. This would explain why symptoms have continued to deteriorate.

February 6, 2008 - I found another explanation why the anti-MAG IgM is not going down as quickly as I expected. Normally, plasma cells producing antibodies only have a lifespan of about four to five days. Plasma cells do not have the CD 20 receptor targeted by Rituxan and therefore stay around for some time. According to an article I found on the nature.com website, there are also plasma cells that are long-lived and stay in the bone marrow.

   I finally got my power wheelchair. Maneuvering around the house is still a challenge. Pinched fingers and paint chipped off the wall attests to that. So far have not ventured outside the house. Since we have not figured out a way to fit it into our SUV, we arranged for a ride with the city run “Dial a Ride” to see a movie on Saturday and have lunch.

  I am concerned that using the power chair all the time will cause my muscles to atrophy. I do not like exercising, but I finally got myself to get on the exercise bike again yesterday. Using the stepladder it was not as difficult as I feared. I made it up to three minutes and 1.2 km, exhausted at the end. I will be working my way up to the original five minutes I used to manage and hopefully more eventually.

 April 20, 2008 - I started a new round of Rituxan last week. Like last time there will be four weekly treatments in total. Without B-cells my immune system is currently suppressed for some time to come and extra caution avoiding infections is very important. A few weeks ago I cut my big toe but did not clean the wound right away. It got infected and antibiotic cream did not make it go away very quickly. I saw my primary doctor who prescribed oral antibiotics. Since this still did not help I saw the podiatrist who extracted an ingrown toenail and gave me a different kind of antibiotics. The infections finally went away. The whole incident taught me a lesson and now I even don't ignore the slightest scratch.

   There still are no major improvements except some minor changes which actually are very encouraging. Although my hands still are numb feeling like I'm wearing tight leather gloves, I seem to have a better grip on things. I can now hold silverware without dropping it and, with some effort, can pick up pills. Getting up from my wheelchair seems to be a lot easier without feeling my knees are buckling under me. However, I do not want to get my hopes up too high to avoid major disappointment later on.

May 20, 2008 - Is the Rituxan really helping? By now there should have been additional improvements which has not happened yet. Two weeks ago I finished another round of infusions.  IgM and IgG went up a little bit which seems to indicate that B-cells are coming back. The anti -MAG IgM only went down a little bit which I don’t understand. I’m not giving up hope yet.

  More positive news: a few weeks ago one of our sons got us a new car which is wheelchair accessible. It’s a Honda Element X-WAV (Extreme Wheelchair Accessible Vehicle) with the passenger seat taken out and an automatic ramp added. Carol and I are enjoying our new found freedom being able to go places again. We are already planning a road trip in fall going east to visit some of our children and their families in Pennsylvania, Michigan and Connecticut.

July 19, 2008 - The lab always does a second test using SGPG instead of MAG since it cross reacts with anti-MAG antibodies. According to the printout I just picked up the anti-SGPG IgM titre shot up also. This means that the last anti-MAG IgM titre reading was correct, 33% increase after my last Rituxan treatment April/May. I asked Dr. Quan, my neurologist I saw a couple of days ago why this would be the case but she had no answer. To my question why there are any antibodies still present if there are no B-cells left, she answered that the Rituxan does not really eliminate all the B cells just reduces them. I never heard that before. I still think that long-lived plasma cells are involved here. My immunology textbook does not mention them but there are some scientists who discovered them in animal experiments. Since plasma cells have no CD20 markers, Rituxan does not affect them.

Dr. Quan did confirm that there are no significant changes in my symptoms since I last saw her in November. I mentioned to her that I had read about high-dose Rituxan being given in some cases (Renaud et al, "High Dose Ritux imab and antiMAG IgM associated Polyneuropathy", Neurology 2006:66) and that 2 patients who received the standard dose the first year without showing improvements did improve the second year after the high-dose. There might be side effects, she told me, but she would support it. The final decision now lies with my oncologist. I have an appointment with him next month.

February 3, 2009 - The oncologist did agree to double the dose and give me 8 weekly infusions which I received in October and November. My latest blood test results just came in a few days ago. antiMAG IgM went down a very small amount, both total IgG and IgM went up some. After two months of Rituxan infusions I expected to see significant drops in antibody titers but that has not happened. When I go to see my oncologist in 2 days I will suggest to him to discontinue treatments. According to the lymphoma protocol there should have been another series of infusions in April. Since I started Rituxan 1 1/2 years ago I have been fairly stable with perhaps some minor improvements. I don't know if the improvements are real or just a result of me learning to adapt better to my limitations. The water aerobics three times a week we started together last month certainly seem to strengthen my legs and arms. Continuation of the Rituxan treatment doesn't seem to be justifiable under the circumstances.

August 2009 - There is not much to report. In May I finished the last of four treatments but there has been no change in my symptoms. In a way that is good news because it appears things are leveling off. The rest of our life has been less steady. Our younger daughter has been urging us to move in with her and her family since she just started her first real job as emergency doctor in the Seattle area. We just sold our house in Colorado and we are going to relocate after we finished our 3 months road trip visiting family in the East.

November 2009 - I had my EMG at the University of Washington in Seattle. Compared to the one from 2 years ago it shows further damage, still mostly sensory with some axonal. Damage is severe, my new neurologist Dr. Weiss told me. Based on what he sees in others, it is as bad as it gets. However, he is willing to try either the double-dose Rituxan or the PP and cyclophosamide (Cytoxan) but does not expect big improvements because the disease has advanced too far. The Rituxan may continue to be ineffective. We discussed again the risks of either treatment. A small one may be PML (progressive multifocal leukoencephalopathy) which is always lethal. There have been 2 cases in CIDP patients recently. Another risk is living with small children now who tend to come down with infections frequently that might find me defenseless. Right now I feel it would be best not to get any treatment and just live with it. It seems risks outweigh chances for improvement. I might change my mind later, though. Who knows. BTW - Dr. Weiss is the best neurologist I ever met when it comes to neuropathies, and very likable, too.

May 2013 - Last week I turned 80 - wow. After a long period without much change in my symptoms , a year ago my hands were getting number and I developed rectal pain that were at times excruciating. I also started having bladder spasms and had more and more difficulties urinating. One day my bladder stopped completely and I ended up in the ER. During several very painful hours the urinary canal was finally opened and I went home with a catheter and a bag. To make a long story short, I started self cathing every day up to six to eight times day and night. For the rectal pain I am using Vicodin, a strong painkiller. My neurologist didn’t think these new symptoms were connected to the CIDP. He suspected pinched nerves in my spine. A recent myelogram and CT scan came up negative. CIDP had to be the culprit. Two weeks I started on Gabapentin (Neurontin ) 300mg which seemed to help some with the pain. Except last night the pain flared up again.

2 years ago I became a pace maker implanted to correct slow heartbeat. Ablation and cardioversion eliminated atrial fibrillation and flutter. The newly manifestation of angina was corrected to some extent with an coronary arterial stent. The two 13 year old (in 2010) coronary bypass crafts were to everybody’s surprise still open and in good shape.

My power chair is five years old and falling apart. .It is contributing to much pain. We’ve been trying to get a new and better one since January. Medicare regulations have become more complicated requiring my primary doctor, a sitting clinic and the supplier to be involved. Evaluations and recommendations are still being worked on 3 months later. I am sill using the old one with seat held together with duct tape. It keeps peeling of and hurts my legs. .

Two months ago we moved into a beautiful new house in Redmond, WA. It’s in a 55+ community and gives both of us newfound freedom and easy accessibility for me..Looking out the picture window in the family and living rooms feels like we are living in a forest. It is a nature preserve wetland just a few feet away.

November 21, 2013 - Not much has happened the rest of the year. I finally got a new power chair, a rather fancy model made in Sweden. My atrial fibrilation/flutter is back causing a great deal of fatigue and occasional feeling of agitation. Except the daily full dose of aspirin not much can be done anymore. I am up to 900 mg Gabapentin but the rectal pain keeps me awake several times a week. The plan is to increase it by 100 mg every week until I reach 1800 mg provided there are no serious side effects. My hands feel number than just a few weeks ago. It seems to fluctuate, getting better and then worse again, the myelin healing and and then getting damaged repeatedly.

Sitting in my recliner I am enjoying the birds coming in large numbers to the bird feeder. Im am reading Buddhist literature trying to be in the here and now, the only place that is real. tathagata (Just this - here and now).

On my birthday my step-daughter gave me this ugly doll. In her emergency room they give it to young and elderly patients to help them with their anxiety.