barlowdc

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  • October 23, 2017 at 3:57 pm

    BC,
    IVIG was my first treatment after my CIDP dx. 3 days of treatment. The evening after day 3, I started getting a headache that can only be described as feeling like someone was stabbing my temple with an ice pick. It was excruciating! Then the “flu-like” symptoms started; high fever, chills, body aches, and still the headaches. My blood levels also starting dropping, so had to have consults with hematology, and infectious disease (ruled out).

    But with all that, within 1 month after treatments I was completely back to my old self. I could do EVERYTHING again, including run (I’m a half-marathon runner)!!

    The doc never did any followup which was probably a mistake because exactly 1 year later, the symptoms returned.

    October 23, 2017 at 3:47 pm

    Well, it’s been almost a month since I finished my treatment. I did 5 treatments. On, On, off, On, off, On, off, on. Prior to starting the treatments, I was walking with a limp, no muscle strength in hands, could not open cans with manual can opener, my calves were constantly tight.

    2 weeks after the treatment, I’m no longer limping, but overall I would say the treatment was not successful. Feet and hands still burn, tingle and feel numb. I still can’t run, I still can’t open cans, I still can’t …….

    The treatment itself wasn’t bad. The most trauma was the placement of the catherer, and the constant pain from that placement. First 3 days after the placement I had to take pain pills. I did have an allergic reaction (hives) the 1st treatment, so I received IV benedrayl (horrible), and then a pill of Benedrayl each time before my treatments. The lowest my BP ever dropped from 90/45.

    I have a followup appt with neurologist on Fri, and I guess I will start on the Prednisone (which is something I NEVER wanted to do but I feel like I have no choice. Neuro won’t do the IVIG because I had bad side effects after day 3. I want my life back. I want to feel well again, and be able to do all the things I use to. So will try a very low dose of Prednisone (maybe 10mg).