Wafa

Your Replies

  • Wafa
    June 25, 2024 at 1:39 am

    Hi Jim La,

    Thank you for sharing your experience with Rituximab treatment. It’s encouraging to hear about the improvements you’ve had.

    I’m curious to know more about the nature of your improvement. Has it been specifically in your muscle strength? Did you gain muscle movement, or has the numbness also been cured?

     

    In my case, I’ve regained strength and the tingling sensations (pins and needles) subsided with IVIG and PLEX treatments, with PLEX being more effective.

     

    However, the numbness in my hands has not improved since 2016 especially im mostly have axonal sensory cidp

    Your insights would be very helpful for me as I consider my treatment options.

    Thanks again!

     

     

    Wafa
    June 25, 2024 at 12:14 am

    Hello everyone,

    I’ve been managing my pure sensory CIDP condition for the past 8 years from last post i was undergoing various treatments including IVIG, corticosteroids, and mycophenolate.

    And For the past 4 years, I’ve been on plasmapheresis (PLEX), which has significantly improved my strength.

    As most of you mention its better than other options at least we can see improvments.

     

    However, I’ve been dealing with permanent numbness that hasn’t improved.

    Recently, multiple doctors have indicated that there are occlusions in my veins, which they believe are a complication from the frequent plasmapheresis treatments.

    Has anyone else here experienced similar issues with vein occlusions due to long-term plasma exchange? If so, what solutions or alternative treatments did your doctors suggest?

     

    I am very interested in hearing about your experiences and any advice you may have. I’m starting to think I might need to change my treatment plan, and I’m quite worried about the potential implications.

    Thank you in advance for your insights and support.

     

    Wafa
    June 24, 2024 at 11:57 pm

    I also had pure sensory cidp > 8 years and i had no detailed info regarding Vyvgart.

    hope soon u can have a clear data or any one can share experience.

     

     

    Wafa
    June 24, 2019 at 4:48 am

    Hi;

    Thank u Jim ;

    True! It may not have been scientifically proven, but I think it is a good experience to have successful clinical trials.

    I read the topics you were discussed. Your scientific-based response convinced me .

    And I notice you mentioned stem cells. Are there really centers that proved successful results , especeally all we agree its high cost, but we also see unfortunatly who use them for commercial purposes?

    Thank u again for sharing ur background and experience .

    Wafa
    September 20, 2017 at 5:22 pm

    Thank you all for your valuable responds im really going to read deeply about PE choice.

    Well; i understand that it varies from one to one .

    But im not sure how physically u could decide that its usful?
    or i have to wait more times?

    Sorry for asking many questions

    I need more explanation from u Whats the big difference have u noticed?

    Pain decreased?
    Numbness decreasrd?
    Muscle strentgh

    Thanks again.

    Wafa
    September 19, 2017 at 2:29 am

    Hi every one;

    Good yo hear some of u have improvments.

    I have done ivig for 3 times with no improvment.

    I dont know why my doctor dosent mention plasma exchange therapy or even cytoxin treatment!!

    As a mom in earlyer stage in CIDP

    **Im wondering do cytoxin has side effect in hair less or pregnancy ?

    Warm regards