SOS… Post by Jo Marie…

    • Anonymous
      February 21, 2009 at 8:22 am

      I took the liberty of reposting this on the CIDP sight, where Jo Marie wanted it originally. If anyone taking Rituxan can help her out, please respond…

      Today, 05:26 AM
      Jo Marie
      Junior Member Join Date: Aug 2006
      Location: Boulder Creek, Ca.
      Posts: 17



      Hello, my comrades in arms !
      Some of you may remember me, some may yet to know me; yet I need all of your help. I have had C.I.D.P. for 10 to 15 years, on ivig for 10. I have been gradually, year by year, developing allergic reactions to each and every brand of IVIG except for one, just barely. ( Feboglamma ) However, for the last year, even that brand my body is hating, and needs massive doses of atarax and solumedrol with benydryl to keep me from going into shock. I have been trying for years, based on what I have read here, to find doctors here who will help me get on a regime of Rituxin, and in Sept. of 2008 I found 2 such kind and supportive doctors. However,, Medicare will not approve it…..
      I am devastated; I won’t give up, but I need some ammo. Can anyone out there please,PLEASE tell me how they got their Rituxan? Or, send me their glory stories of how Rituxan helped them with CIDP ? Apparently, in California, CIDP is so rare they haven”t heard of it, let alone of a cure for it besides IVIG … now if I had MS there would be no problem…
      I am so discouraged; I was so close!
      I have been getting worse and worse, for a long while, and trying to just accept my fate. But the thought of a remission is too glorious to pass up. Please help me, my friends! Your help benefits all of us in the long run, as this information will be shared and passed on to all of us in Calif. who are in the same sinking boat! ( all 10, 20, 250 of us? )
      Thank you for being there when you are needed, much love
      Jo Galt

    • Anonymous
      February 21, 2009 at 10:27 am

      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.

    • Anonymous
      February 21, 2009 at 2:38 pm

      Jo, Andrew pretty much explained what there is to know about Rituxan. I have the same variant of CIDP as he does except my symptoms are much more advanced. I’m also on Medicare and it took me two years to finally convince an oncologist to look for non-Hodgkin’s lymphoma. Based on blood tests and a bone marrow biopsy he determined that I had a low grade B-cell lymphoma which qualified me for Rituxan. I’ve been receiving treatments every six months since the fall of 2007. I’m due for one more in May. Unfortunately, I have seen only minor improvements perhaps because my symptoms are much more severe than Andrews. It is also possible that I belong to a rather large group of people for which Rituxan does not help.

      There are some people on this forum who have been receiving Rituxan for CIDP. One of them is a child and I have no idea how they managed to get it. You may want to look at the thread “CIDP and Rituxan” and contact his mom to find out more.

    • Anonymous
      February 21, 2009 at 11:50 pm

      I have several suggestions just for you to think about.
      First, Medicare and medicaid seem often to say no the first time to anything expensive, so if you have not appealed, do so. Gather as much information as you can on the use of rituxan in CIDP and send it all in. Make a summary letter with anything written from neurologists about it–including published papers in the medical literature and quotes from the CIDP handbook. Also ask for a person who specialized in CIDP to review the appeal and give them the names of all physicians on the GBS-CIDP advisory board. Just any neurologist will not do–be insistent that it needs to be at least a neuromuscular specialist and preferably someone with a lot of experience like those on the board.

      At the symposium, it was stated that the consensus was that about half the people with CIDP responded to Rituxan. The percentage of responders among those having CIDP in association with a monoclonal gammopathy was higher, but there were a lot without this that responded.

      Second, if the appeal does not work, look into the patient assistance program. I have the address at work. We were able to get free rituxan for a young man with relapsed lymphoma from one of the nations of the former Soviet Union who was over here in the US as a student and without insurance. It also took a lot of persuassion.

      Third, I have been hearing this week about subcutaneos IV IgG administration and that there are a lot fewer side effects because it goes under the skin and is slowly absorped rather than going straight into the bloodstream. I do not know if this would work as well for CIDP (since it is a new way to give) nor do I know if it is “safe” in someone that almost anaphylaxes, but it seems safer and worth asking about. It is given weekly. The drug administration company representative that I was talking to had CIDP and GBS listed as reasons one might want to use this way of administration, but she did not know data about its use in these cases. She was going to ask and I will pass on to this site when I hear anything.

      WithHope for a cure of these diseases