Still have leg pain

This topic contains 3 replies, has 4 voices, and was last updated by  BryanF 3 months, 3 weeks ago.

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  • #116163

    Buzz
    Participant

    Hello all,
    I was diagnosed with CIDP Dec 2017. Had my 5 day loading dose, and maintenance every 28 days…Gamagard 600mL. Due to a couple of major screw ups by my Neurologist’s office in not getting the prescription right….the second scrip they wrote for a second 5 day loading dose, then changed it to a 7 Liter dose. Yes SEVEN LITERS!! In April I retired and had to change Drs. Had my first infusion last Thursday under new Dr.
    Gamagard has re leaved my nerve pain, very seldom do i have the pins and needles feeling in my feet, but has done nothing for the muscle weakness and muscle pain. I walk my dog almost every day approximately 1 mile, then pay for it in the form of pain the rest of the day. Thoughts?
    Buzz

    #116214

    Helga
    Participant

    Gamagard don´t work for me, my white blood shells go down so low it is dangerous for me to get it and last time I got it it did not do anything for me, Im no on nanogam and that works for me if I get 1 liter per day and that is for 3 days evry 4 weeks.and it holds it back but I dont have not felt some big relief, pain does get little better but numbness in feet and hands are the same.
    hope you don´t feel given up some days are worse then others but we have to use what we have to make our live as good as we can. One day at the time. 🙂 and smile 🙂
    greetings from Iceland, Helga

    #116215

    Jim-LA
    Participant

    The following chart compares the major brands of IVIg/SCIg. Perhaps it might help you choose the brand that might have the least side affects for you:
    https://primaryimmune.org/wp-content/uploads/2017/02/IVIG-Chart-2.2017.pdf

    #116222

    BryanF
    Participant

    Regaining muscle strength is a long term proposition. I’ve had this disease for two years now, and my physical strength is still far short of normal and my endurance is limited.

    Because this disease attacks the nerves, signals to the muscles are interrupted and they atrophy. Some folks fully recover, some are severally afflicted, and some of us are chronically affected.

    My guess is that because my CIDP acts up on a regular basis, my nerves will never fully heal correctly and I’ll have to settle for being 85-90% of pre-CIDP self in terms of strength and so on….

    Oh, and GAMAGARD. I usually get Privigen, but during one infusion session, they were out and substituted GAMAGARD. It made me sick for an entire week. I could barely walk for 3 days, lost a great amount of strength. Never will take that stuff again.

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