Rituxan

Anti mag neuropathy appears to be a rather rare disease and one that has different symptoms in different people. I suffer from numbness in my feet, lower legs and in my hands. Others who say they have anti mag have pain in their extremities, not me. I have been treated with rituxan on two different occasions and both times the results were positive and helpful. The last time was two years ago and I am guessing that I will need another treatment within the next two years. Rituxan appears to be a treatment and not a cure. Weather seems to play a part in my neuropathy. I live in a temperate ocean climate. The temperatures rarely get over 95 degrees and most of the time the temps are 55-75. Warmer weather makes the numbness more pronounced. At times during cool weather the numbness in my hands is barely noticeable, during periods of hot weather the numbness is quite bothersome and uncomfortable. Needless to say but I have been avoiding the really hot summer weather that frequents much of our country. One thing that helps with my hands is to keep actively using them. The do get uncomfortable after some time on the computer but I go to the health club three days a week and workout with weights and I always feel better when I leave and the numbness is less noticeable. When I sleep I always put my hands under the pillow where they feel better.

Rituxan

I have been treated with rituxan twice. The first time was about 2004-05, the second around 2011. I went to an infusion center once a week for four weeks. They stuck a needle in my arm and hooked me up to a bottle of the rituxan. The first infusion took about 4 hours, they went slow to be sure there were no side effects. The rest of the infusions took about 2 hours. I experienced little or no reaction to the process other than going home the first day and sleeping for a couple hours. After all the other infusions I went about my daily business. Rituxan can be very expensive. When I was originally treated my health insurance company picked up the cost. I don't have those records with me at the moment so I'm not sure what they paid. The second time I was on Medicare and rituxan is not covered for my condition. It is considered an experimental treatment. Initially the infusion center quoted me a price of $8000 per treatment including a discount for paying early. Through my neurologist I was able to obtain help from the Genentech Foundation. They ended up paying the entire amount. There are limits to your income to be part of this program. You can do a search on the web and you might find some wildly varying costs for rituxan, but then there are wildly varying costs for all our medical treatment, such is the system of American health care.

April 2013

It has been quite awhile since I last posted which I guess is good. I have been feeling pretty good and always feel better if I keep moving as in cycling or working out. Lately my hands have been feeling a little more consistent numbness which leads me to believe my blood numbers are starting to climb again. I think it is about time to return to the neurologist for another blood test. As maybe I have said before the blood test is the best indicator of where the disease is. However with all that said overall I'm feeling pretty good, my energy is up, my fitness is up and my strength is holding pretty steady. The fact that I not losing a lot of strength is confusing to my old neurologist as strength loss is something that others with the disease experience. I should add that last years blood test showed me as normal with no indication of the disease. Very good news indeed which I attribute to the rituxan.

Waiting a new blood test

It is July and I am waiting for the results of my latest blood test. The neuropathy symptoms aren't any worse nor are they any better. The hands are still numb as are the legs. Hot weather seems to make things worse cool weather makes things better. I am still active and I have not lost much strength. I attend a health club three days a week and am holding steady on my weights but not really improving at any of my exercises. My doctor and I talked about another rituximab treatment pending the outcome of the latest blood test. A major problem is the cost, Medicare does not cover rituximab for my ailment and the price tag is in the thousands.

March

At the end of March my balance is still good enough to ski and ride my bike. The numbness in the legs and hands have never gone away but I can live with it. Yesterday my feet felt funny as I walked around town but that feeling seems to come and go, why I don't know. The first day of skiing my feet feel weird but after a couple days they feel better. This leads me to the idea that exercise is important and necessary. We have had rain the last couple weeks and I am looking forward to some sunny weather and bike time. The end of May I will go see the neurologist and we will do a blood test again. The last time it was close to normal but I'm not sure how long that will last.

Progress

Year ago I experience a severe balance problem that affected my walking and definitely stopped my cycling and skiing. Lately I have had the feeling that my balance was improving so I tried cycling again. To my satisfaction I experienced no difficulties and definitely did not crash. I have now ridden about 35 miles in three days with no problems. This is just in time for ski season. If I can cycle I'm pretty sure I can ski.

I attributed my balance problem to the CIDP and the doctors seemed to agree without absolutely saying yes it is the CIDP. Bottom line is I don't think they know. A month ago I ran into a high school classmate who described a similar problem and Meniere's disease. Basically it has to do with the inner ear and is not treatable except for reducing salt intake. So that is what I did, eliminating food and drinks that were high in salt. I didn't go overboard and eliminate all salt just those items that I knew were high in salt. I think it made a difference. At any rate I'm back on the bike and happy.

October

The latest blood test in June was normal, but my body doesn't think so. The test came back showing no autoimmune indication. First time in five tries. Since then I have had two MRI's one of the brain and one of the neck. The brain MRI showed nothing ..... old joke. They were looking for signs of a stroke and didn't find anything. With the neck they were looking for nerve problems caused by the spinal column, again everything looked normal. I meet with the new neurologist again in two weeks to discuss the latest MRI and where we go from here.

The hands still feel numb as I am typing and the legs still have numbness. I believe everything feels worse in warm weather and when I don't exercise. Balance is still an issue, some days are better than others and there is a little improvement over a month ago. Then again maybe it is just wishful thinking on my part.