Anti-MAG treatment update

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This topic contains 98 replies, has 10 voices, and was last updated by  Peter 9 months ago.

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  • #113791

    Matou
    Participant

    and if you want “my” small facebook group about neuropathy anti mag

    https://www.facebook.com/groups/1592338124143555/

    #113794

    Matou
    Participant

    Hello everybody

    This information to follow

    The Obinutuzumab (GAZYVA), a Potent Anti-B Cell Agent, in the Treatment of Rituximab-Unresponsive IgM Anti-Myelin-Associated-Glycoprotein (MAG)-Mediated-Neuropathy will be submitte to the American Academy of Neurology annual meeting April 2018

    Take care

    Matou

    #113808

    Peter
    Participant

    Hi Matou,

    Thanks for the info on the Anti-MAG Facebook page and other links to the Anti-MAG studies and potential treatments. With Rituximab, Obinutuzumab and the Polyneuron drug, we have more hope for an effective treatment! I joined the Facebook group and asked how we can sign up for the IMAGINE study.

    Currently, I have been receiving IVIG infusions for 6 weeks. Although there have not been many good results reported on the Internet with IVIG treatment for people with anti-MAG neuropathy, during the last 1-2 weeks I notice my walking is faster and I can walk fast enough so I don’t look like an “old man.” Maybe balance is a bit better, too. But the neurologist said 6 months of IVIG treatment is needed to decide how much or if IVIG will help. I will post my progress here.

    Peter

    #113816

    Matou
    Participant

    Hello Peter,

    I am Christophe the person in France who opened an anti mag group on Facebook, my username here is Matou
    I am very pleased that the ivig gives you a better self-evident, it is the first intention of treatment for the forms of neuropathies anti mag very slow in their progression
    On the facebook group you will find in the files a guideline on the treatments, it is the last leaflet of JM Vallat
    I also had 4 years ago two cures on a week of ivig with a better being, I stopped because I made an allergic reaction.
    all the best for everybody
    Matou

    #113846

    Peter
    Participant

    Hi Christophe,

    You said IVIG treatments were helping you but you stopped 4 years ago because of an allergic reaction. My neurologist prescribed the IVIG at a slow 200 ml / hour rate. The nurse at the hospital says almost all their IVIG patients have a 300 ml / hour rate. I also get a 1000 ml bag of saline for one hour before the IVIG. The nurse said the slow 200 ml / hr IVIG rate and pre-saline for one hour may help prevent allergic reactions.

    What rate did you have for your IVIG treatments?

    Has your condition remained stable or slowly progressed since you stopped the IVIG 4 years ago?

    I have noticed after 6 – 7 weeks of IVIG I can walk faster. I did not expect much improvement from IVIG treatment but my neurologist prescribed 6 months of IVIG since improvement can be very slow. I think you are right that IVIG is usually the first line of treatment, probably followed by Rituximab.
    We can hope that the Polyneuron.com anti-MAG drug will be a much better treatment but the clinical trials will take a number of years.

    Peter

    #113876

    I was told a fact that add to my understanding of Anti-Mag. The Anti-Mag antibodies can be generated by different lines of cells. There is no test specific enough to identify what cells are generating Anti-Mag antibodies but if the antibodies are generated by C20 cells, then Rituxan can be an effective treatment.

    Speaking of Rituxan, I have been denied coverage by medicare Part D thru 3 appeals and am now at the administrative judge level.
    Based on an authoritative article http://www.medicareadvocacy.org/cma-report-medicare-coverage-for-off-label-drug-use/ has to be appealed under Part D of Medicare.

    In Dec. 2017 Jim LA wrote “I’m on Medicare and all my 720MG Rituxan treatments qualified to be billed under Part B medical, where my cost share is the lowest with my “Plan N Supplement”.

    Jim, please share the secret of your success with me.

    Thanks,
    Ila

    #113883

    Matou
    Participant

    Hello Peter,

    I do not remember the rate of flow per hour of ivig treatment, but it was very slow.
    I was hospitalized Monday to Friday night, allergists have not made the link between skin allergy and ivig.
    Although this is rather common.

    I felt an improvement that allowed me to resume the race on foot.
    For about a year the disease progresses slowly to the limbs my conduction velocities and sensitivity are worse at the last emg.
    I’m actually walking less quickly and I’m less sure on my feet
    Ivig are in the front line when anti-mag neuropathy is not too severe, immunosuppressive drugs are second-line.

    Take care of yourself
    Christophe

    #113885

    Peter
    Participant

    Hi Ila,

    That is interesting about the C20 cells. That probably explains why Rituxan works for some people but not everyone.

    I read on the United Health Care website that Rituxan is not approved for anti-MAG neuropathy through Medicare since there have been no clinical trials that have proven it is effective. But we know it IS effective by the smaller trials that have not involved a large enough number of patients to make the trial results statistically significant. It must be frustrating for you and others who have been helped by Rituxan but Medicare won’t cover the costs.

    While I am still 4 years away from qualifying for Medicare, I understand they DO cover the costs of IVIG. I have been getting infusions every 3 weeks at a “charged” price of $25,000, with the “insurance will cover” cost of $9,000. So about 18 infusions per year x $9,000 = $162,000 per year for IVIG treatments.

    Since Rituxan has much longer lasting benefits than IVIG treatments (if they help your anti-MAG), I wonder if Medicare could be convinced to cover your Rituxan if you showed them the yearly cost of Rituxan vs. IVIG treatments. Maybe you already have done so? I find it hard to believe that Rituxan infusions every 6 months or 3 months would be more expensive than IVIG every 3 weeks.

    Peter

    #113886

    Peter
    Participant

    Hi Christophe,

    I have also read that allergies are a side effect of IVIG, as well as headaches. I always get a mild headache that starts 2 days after the IVIG infusion and it lasts for 3 days, even after taking Ibuprofen. But you are wise not to get the IVIG anymore due to the allergic reaction. My allergist says that each allergic reaction can be worse than the one before. That is good that after 4 years of stopping your IVIG that your condition has only very slowly worsened. After two months of IVIG I am walking faster and balance is better. My neurologist prescribed a total of 6 months of IVIG so I will report my progress on this thread.

    But I hope for all of us the Polyneuron.com anti-MAG clinical trials will be a success. I am thinking of going to Switzerland for the Phase 1 clinical trials if they will accept me.

    Peter

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