Your Replies

  • December 22, 2021 at 9:16 pm

    It seems you are reluctant to share your Medicare health plan type here and that limits researching further recommendations. Did you read the CMS link about ‘Accepted Off-label Uses’? Since you already have experience getting off-label use approved for CIDP, you may need to leverage that experience again.

    December 16, 2021 at 12:08 am

    Off-label use of ocrelizumab to treat cidp (off-label because it isn’t yet approved for CIDP by the FDA):


    December 13, 2021 at 3:11 pm

    You may also find the following information helpful:

    Insurance Information

    December 11, 2021 at 10:46 pm

    There is a center of excellence in Kansas City, about 250 miles West of you. Please contact them to see if they take your insurance:

    University of Kansas Medical Center

    There is also the Neurology Department at Washington University in St Louis:



    December 10, 2021 at 10:05 pm

    The link above takes you to a Conduit login. This is part of PlatformQ Health, which hosted the GBS/CIDP Virtual Summits for 2020 & 2021. More here:

    PlatformQ Health to Host the GBS|CIDP Foundation’s 2020 Virtual Summit

    Sharing the latest in partnership news at PlatformQ Health

    December 2, 2021 at 3:23 pm

    Medicare covers Rituximab costs under Part B for certain conditions. Following is the latest summary:


    Depending on which Medicare Advantage plan you have, coverage will vary. Here is the Blue Shield California coverage statement:


    Billing and Coding is crucial in getting Medicare coverage:


    I had my Rituximab treatment covered under Medicare.  My experience with the treatments can be found here:

    Anemia Due To CIDP?


    November 27, 2021 at 2:27 pm

    I wouldn’t get either vaccine. These two vaccines (Shingles and Pneumonia) are known as high risk in bringing on GBS/CIDP/MFS in those who have already had such.

    Read about Shingles here: https://forum.gbs-cidp.org/forums/topic/shingles-2

    There are many discussions here about the Pneumonia vaccine and adverse reactions. Simply search the forums for “Pneumonia vaccine”.


    November 4, 2021 at 9:25 pm

    What are the two insurance plans (details please)?

    Here are some links to discussions about insurance. I hope they may provide some insight for you.

    Denied/Delayed ivIG

    Insurance asking for "Medical Necessity" for IVIg treatments

    Negative Spinal Tap-Still CIDP?

    Please post in one these other threads that is the closest to your situation. Your input can help others experiencing a similar dilemma about insurance.

    October 19, 2021 at 11:14 pm

    Looks like my anemia has returned. My RBC was 8.0 last month and they gave me 2 pints of blood. I go for blood tests this week and a PET Scan next Monday to help them confirm the Lymphoma. My Hematologist will probably put me back on Rituximab. I’ll update this thread when I learn more.

    October 13, 2021 at 10:50 pm

    I have never had mononucleosis but I understand it can trigger GBS in some. Without the tests to confirm GBS (check for elevated protein, EMG, etc.) it could also be Epstein—Barr Virus (EBV). Some symptoms are similar. Here is a CDC overview:


    October 8, 2021 at 9:21 pm

    Most presentations are not recorded. Some may be watched on the Foundation Twitter feed. A few more are available on the YouTube feed.

    October 7, 2021 at 4:10 pm

    Doctors and hospitals in the Miami area are listed here:

    CIDP doctor in Miami

    September 27, 2021 at 9:35 pm

    For some alternatives to Prednisone please read the following forum thread:

    40 days and no response to ivig – can it still work?

    September 26, 2021 at 9:39 pm

    A rapid onset of CIDP symptoms and worsening conditions are best treated (in my opinion and based on my experiences with the disease) first with 3-4 days of Plasma Exchange, followed by 8-10 days of IVIg or SCIg. Sometimes an immunosuppressant drug may be needed to help the treatment to work.

    It should be noted that PE will cancel out IVIg/SCIg and Rituximab. Ig will cancel the effects of PE and seriously reduce the benefit of Rituxan. So the order of treatments would be important for best results.

    IVIg never worked for me. I kept getting worse while on it. Then I transferred to a center of excellence where the neurologists had extensive experience with GBS/CIDP. They put me on a combination of Plasma Exchange and Prednisone. Within 2 days I felt improvement.

    Unfortunately, Prednisone can have many side effects and I seemed susceptible to most of its side effects. If I had to do this again I would get an alternative to Prednisone, I have since learned there are many.

    September 26, 2021 at 4:56 pm

    I dumped the Ropinirole because of its side effects for me. More info about RLS here:

    Restless leg syndrome