Your Replies

  • July 13, 2021 at 1:11 am

    No. GBS presents much more acutely, and reaches its most severe state in less than 4 weeks. CIDP presents more slowly and reaches its more severe state typically in over 8 weeks. Because of this, GBS is considered a classic acute autoimmune neuropathy while CIDP is a classic chronic autoimmune neuropathy.

    May 14, 2021 at 4:58 pm

    Thanks Jim, yes seems similar to your experience. Will have to talk more about this to my doctor. How have you been going?

    May 14, 2021 at 7:52 am

    Hi Ron thanks for replying,hematocrit are the amount of red blood cells. My ferritin levels are nearly double the normal range which isn’t good but my iron level is normal.

    April 3, 2021 at 9:42 pm

    I had my first covid vaccine 5 days ago, here in Australia we only have the AstraZeneca vaccine I had a high temperature for 48 hours and still feel very fatigued as well.

    January 28, 2021 at 1:49 pm

    Thanks chirpybirdy, I have a yearly liver function test too which is getting higher every year and now swelling in my feet from fluid.

    December 1, 2020 at 10:38 pm

    Yes you can have these issues I have mild numbness but it’s increasing.

    December 1, 2020 at 1:51 am
    October 30, 2020 at 10:36 pm

    Sorry to hear you are going through this, it can be tough at times.
    I have all the same symptoms and have yet to find anything that helps.

    October 23, 2020 at 1:24 pm

    Thanks Sandra 😁 Yes 75 grams is the correct dosage.

    October 22, 2020 at 11:44 pm

    I am considering stopping soon after three years of 75mg every fortnight.

    October 22, 2020 at 11:41 pm

    With ivig I go okay on it then I relapse and it’s worse each time, three times and I am not liking it but it does work for others. Everyones journey from what I’ve read has a different rythm.
    As for low blood pressure that would be odd as you are adding volume to your blood which increases pressure so your lowed blood pressure is odd then each person seems different to a degree.

    October 22, 2020 at 9:36 pm

    Hi Sandra here is CSL Behring’s consumer info page 4 is side effects. I think there is more going on for you sounds like Privigen maybe infusion is to fast. My blood pressure goes up for 3 days after. Maybe mention the swelling going down and going back up when you’re on your feet it’s oedema/Edema of some sort. Maybe this is a reaction for me too.

    October 22, 2020 at 6:47 pm

    Hi Sandra, yes sorry to hear of your reaction to Privigen, my legs burn and tingle all the time as well with feet swelling not sure if this is from Privigen as I had these symptoms beforehand still the same after 3 years on Privigen. My Doctor does regular( twice a year) kidney function test as from her experience with IVIG it puts stress on your Kidneys due to the extra volume of fluids in your blood which can cause leg swelling and pain.
    Try lying down with your legs elevated in bed so they are higher than your heart for a few hours this may help.

    September 13, 2020 at 8:19 pm

    Had 2 relapses recover to appoint but have less leg/foot function.

    September 12, 2020 at 4:19 pm

    The only treatment that is the same is intravenous immunoglobulin. They use a chemotherapy drug cyclophosphamide to suppress the immune system which is in adifferent drug family that is used in CIDP
    Corticosteroids which are used in CIDP are unlikely to be of benefit people with Gallop syndrome.
    So it’s a yes no answer.