Rituxan message from Jo Marie

Pam…thanks for reposting the message from Jo Marie.

I am pleased to share whatever details I can about the success I have so far enjoyed from treatments I have undergone with Rituxan. However, I must first explain that there could be many differences between my situation and that of Jo.
First, I don’t actually have CIDP. Rather I have a variant called IgM MGUS. The manifestation is the same…a chronic inflammatory demyelinating polyneuropathy. However, the source of the problem is a buildup of IgM protein in the form of anti-MAG (anti-myelin-associated glycoprotein). The treatment using Rituxan is designed around the fact that anti-MAG is produced by the B cells, and B-cells carry the +CD20 marker, which is targeted by the Rituxan. Therefore the Rituxan acts by reducing the B cell population and thereby reducing the anti-MAG titers in the body, thus allowing time for nerve cells to heal.
Second…I am in Canada so we have a different health care system. In fact, the health care system in Canada varies from one province to another. Here in Ontario, the health care system does not cover treatment of IgM MGUS using Rituxan. However, if the patient has multiple myeloma or NHL, the Rituxan would be covered. In addition, private extended health care coverage as offered by employers also does not cover Rituxan because they say that nothing which can be delivered in a hospital is covered, and that Rituxan can be delivered in the hospital. (A copout as far as I’m concerned).
I’ve had to pay out of my pocket for the Rituxan treatments I’ve had. One small compensation is that the drug company offered a small reduction (“patient assistance program”) and that it is partially deductible for income tax purposes.
Now the good news. From my own experience, the drug has been wonderful. I have regained completely the sensory nerves in my hands, and I think that my feet have improved sensorily too (it’s hard to tell because they were numb and there is still numbness…but maybe not so bad). For sure, I’ve seen a HUGE improvement in my motor nerves. I have no problem anymore with balance and my gait is normal. I have returned to running and my pace has improved tremendously. I have made a chart of my average monthly running mileage and pace…it is absolutely amazing and convincing. I hope to share it at the upcoming GBS/CIDP Conference in Toronto on April 18th.
Personally, I intend to appeal the refusal of the health care system to cover the drug Rituxan. Clearly, the prescribed medication has had positive effects and will result in a much reduced burden on the health care system over the long term. I am just waiting for results first from a CAT scan and bone marrow biopsy to determine if there are underlying causes of the IgM MGUS. After I get the results, I will launch my appeal armed with any and all information I can get my hands on.
By the way, the only drug I have taken right from diagnosis, has been Rituxan so the data is clean and there can be no doubt as to the source of the improvement.
One last comment…does Rituxan work for conventional CIDP? I sure hope so, but it seems to me that everyone on the forum with CIDP ends up taking other drugs like IVIG, plasmapheresis, etc. Maybe in prescribing Rituxan, your doctor has discovered a spike in IgM and an anti-MAG problem? Quoting from the CIDP Foundation web page [COLOR=”Blue”]”We suggest considering treatment with Rituximab in CIDP resistant to conventional therapy, at least in cases associated with IgM lymphoproliferative diseases. Chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) is an immune- mediated disease responsive to intravenous immunoglobulins (IVIg), plasma exchange or corticosteroids. CIDP may be associated with IgM monoclonal gammopathy, with the IgMs directed towards peripheral nerve antigens. Immunosuppression is sometimes effective (Kelly et al., 1988), but there is concern about long-term treatment (Nobile-Orazio et al., 2000). Rituximab is a chimeric monoclonal antibody against the CD20 antigen on B-cells. The B-cell depletion and the lack of relevant side-effects have encouraged the use of rituximab also in diseases with non-malignant B-cell proliferation (Zaja et al., 2003a,b), and in neuropathy with IgM monoclonal gammopathy (Renaud et al., 2003) or polyclonal IgM antibodies to peripheral nerve antigens (Pestronk et al., 2003).” [/COLOR]
I certainly wish you the best Jo and hope that the Rituxan can bring the benefits to you that I’ve enjoyed. Also, I hope that the drug plan you have in USA can be convinced that they need to cover Rituxan given that other treatments are not working.
Andrew