Coverage for Rituxan
Sorry to hear about your husband’s condition. The loss of balance and loss of feeling can be a scary thing. It is all caused by damage to nerves including the proprioceptors which are nerves which provide feedback to the brain as to the position of the muscle. This of course includes muscles in the toes which tell the brain how much pressure is being applied so that the brain can respond by altering body position, etc. The wiring on these machines (called the “human body”) is incredibly complex, and indeed a marvel. But you don’t realize what is happening in the background until something goes wrong.
The damage to nerves can be caused by anti-MAG (anti-myelin associated glycoprotein) which is an antibody which is directed toward the myelin sheath surrounding the nerves. This is more predominant in IgM MGUS than other types of MGUS, but not necessarily exclusive.
Regarding coverage, I cannot speak for the USA as I am in Canada, but the similarity between countries regarding drug coverage is significant. For MGUS there is no allowance for coverage of treatment with Rituxan because it is still considered experimental (despite numerous studies and success stories). I personally had to pay for it out of my pocket because I did not want to risk waiting any longer to fight the insurance companies or government. I am doing this separately. But Rituxan is covered for some other health issues like Rheumatoid arthritis and non-Hodgkins lymphoma as mentioned by Norb.
So coverage in your husband’s case may not be out of the question.
There is no guarantee that Rituxan will work for your husband, and it depends on the real diagnosis. Perhaps he should be given a combination of Rituxan and other medication, as has shown success with others. But again, it really depends on what they can find with the blood tests, etc.
One personal thought is that the imbalance and other abnormalities seem worse when the feet are swollen which generally happens to me later in the day but may be all the time with your husband because of his medication.
Sorry if I rambled a bit in this posting. I sure hope that your doctors can pull their act together and get a proper diagnosis and the appropriate treatment. This GBS/CIPD/MGUS is an awful disease because it involves three systems – immunology, hematology and neurology. The experts in one field don’t necessarily understand the other fields. I think that is why there are so many really smart people in this forum – because they are forced to learn about all three in order to understand what is happening.
We are hoping the best for your husband and continued strength for you as the caregiver.