Jim-LA

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  • in reply to: 40 days and no response to ivig – can it still work? #118023
    Jim-LA
    Moderator

    My first choices would be Rituximab (Rituxan) or CellCept (mycophenolate). Myfortic (mycophenolic acid) is a good alternative too, but you’ll need regular blood tests. CellCept (mycophenolate) is a first-choice medication for preventing organ rejection since it doesn’t hurt the kidneys or liver like its alternatives. But it can have side effects for some.

    In some cases, immunosuppressive drugs such as Imuran (azathioprine), Prograf (tacrolimus), cyclophosphamide, Afinitor (everolimus), cyclosporin, Rapamune (sirolimus), and type 1 interferon (INF-1?) and IFN-beta – can be used to limit corticosteroid and immunoglobulin use and may be indicated because of disease progression or poor response despite aggressive treatment with established therapies such as IVIg.

    In all cases do your research on each drug and discuss them with your doctors. Maybe get a sample of the meds before getting a large amount to make sure you tolerate it OK. Also make sure they are covered properly by your insurance because some can be costly.

    Many of the alternative drugs are discussed here:
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3487533

    in reply to: 40 days and no response to ivig – can it still work? #118017
    Jim-LA
    Moderator

    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.

    in reply to: Forum Topic Sorting #117980
    Jim-LA
    Moderator

    Yes, the sort by most recent topic/comment is working again.

    Thank you for restoring that functionality. The side bar seems to be fixed too.

    in reply to: COVID Vaccine #117951
    Jim-LA
    Moderator

    This forum thread contains duplicated and incomplete vaccine info. Please post further comments and info about the Covid shots in the main topic thread so that everyone is on the same page and sharing knowledge. This is the GBS/CIDP forum topic that should be used:

    Covid 19 Vaccine

    Thank you!

    in reply to: Covid 19 Vaccine #117950
    Jim-LA
    Moderator

    California guidelines are here:
    https://www.cdph.ca.gov/Programs/CID/DCDC/Pages/COVID-19/Provider-Bulletin-2-12-21.aspx

    Individual cities may vary their guidelines.

    in reply to: “Hizentra Belly” #117946
    Jim-LA
    Moderator

    I have never used Hizentra, Ig doesn’t work for me. Plasma Exchange and corticosteroids is what helped me.

    Here is a comparison of the various Ig products:
    https://primaryimmune.org/wp-content/uploads/2017/02/IVIG-Chart-2.2017.pdf

    in reply to: “Hizentra Belly” #117943
    Jim-LA
    Moderator

    One of the reported side effects of Hizentra is loose skin after long term use. Perhaps that’s nicknamed Hizentra Belly? It is considered a very infrequent side effect and does not pose a health risk.

    Firming creams that contain retinoids and hyaluronic acid may help tighten the loose skin.

    in reply to: Covid 19 Vaccine #117942
    Jim-LA
    Moderator

    Do not receive a “live” vaccine (like J&J) while using immune globulin (IVIg/SCIg). The vaccine may not work as well and may not fully protect you from Covid. The newer mRNA vaccines are less likely to be negated by the Ig treatments.

    in reply to: Any one diagnosed with DADS-I? Or Poems Syndrome? #117939
    Jim-LA
    Moderator

    I believe the group Tamme is referring to is here:
    https://www.facebook.com/groups/1592338124143555/?ref=bookmarks

    in reply to: Covid 19 Vaccine #117938
    Jim-LA
    Moderator

    Each State and County/City has their own rules for the shots. Where is your appointment?

    in reply to: Covid 19 Vaccine #117935
    Jim-LA
    Moderator

    Dear Buckthorn, I don’t think all medical professionals know for sure what may have caused an attack of GBS/CIDP. Some have had no experience with the disease and have only read about it sometime in their past. Others jump to conclusions without knowing how to properly diagnose the disease or its probable triggers/causes. Plus, there is no VAERS validation process to keep anyone from masquerading as a medical professional and posting misinformation.

    If there was a way that VAERS could screen out the inexperienced reports and only show the proven medical experts who actually have hands on experience with GBS/CIDP, then the info could be useful. Until then, I won’t be trusting info reported in the VAERS database.

    in reply to: Covid 19 Vaccine #117931
    Jim-LA
    Moderator

    VAERS is a passive reporting system, meaning it relies on individuals to send in reports of their experiences. Anyone can submit a report to VAERS, not just medical professionals. Consequently, VAERS can receive unverified information about adverse vaccine reactions.

    If I had access to view the reports that are in the VAERS database, I wouldn’t know which are valid or duplicates, or which were caused by something other than the vaccine being blamed. The data is unverified, unresearched, often anecdotal – and made immediately available to the public. Anti-vaccination groups can skew the results with false reports.

    I don’t put much faith in the accuracy of VAERS data.

    in reply to: Covid 19 Vaccine #117921
    Jim-LA
    Moderator

    Alin19buna, Thank you for posting in the proper forum thread and sharing your knowledge with us!

    in reply to: Mental Health Support #117916
    Jim-LA
    Moderator

    These forums deal with very rare diseases that even experienced medical professionals with years of practice have a hard time answering specifically. A social worker, licensed or not, would be unlikely to have reliable medical advice or provide worthwhile support.

    in reply to: COVID Vaccine #117913
    Jim-LA
    Moderator

    Please move this discussion into the main topic thread here:

    Covid 19 Vaccine

Viewing 15 posts - 1 through 15 (of 712 total)