My CIDP Panzyga IVIG Log of year-long 2018 Clinical Trial

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This January 18, 2018 I have begun participating in the Panzyga 10% IVIG year-long 2018 Clinical Trial that has the objective of determining the effectiveness of Panzyga IVIG for CIDP Chronic Inflammatory Demyelinating Polyneuropathy, as well as determining efficacy of various infusion rates. Panzyga is produced in Europe by Swiss-based company Octapharma AG but is not yet approved for CIDP although shown safe & effective for Primary Immunodeficiency. I had been on a maintenance dose (40 g per four-weeks of Gamunex IVIG) since January 2017 without improvement in my CIDP symptoms and through this Panzyga study would like to now compare a return to the full standard dosage of IVIG (1g per kg body weight per four weeks = 70g IVIG). At the start of 2018 and the Panzyga trial, I judge my state of health at only 30% of optimum (compared to pre-CIDP diagnosis). I especially would like to experience a significant pain reduction with Panzyga (accepting that this is in the realm of a dream). I am also wondering if Panzyga will have less adverse side effects, especially lip-blisters. Having already taken various brands of IVIG for six-years, I have found that adverse effects are less with a lower infusion rate and am used to a max of only 150 ml per hr: This Panzyga study will test a rate of up to 588 ml per hr, a bit scary.

 

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Summary Panzyga IVIG Results Start January 18, 2018
» Trial started January 18, 2018 with blood-work, nerve conduction study and 70 g Panzyga IVIG infusion: Nothing unusual accept that the infusion rate max was 250 ml per hr ( my usual 150 ml per hr rate)
» January 24, 2018- Today had three moderate cramps (left leg, diaphragm, and right arm) all within a few hours

» January 29, 2018- Entering the twelfth day of the first cycle I have had only minimal lip blisters. But for the 2nd and 3rd infusion cycle I find I have full blown lip scabs that last ten days - indeed blood oozing from pin-prick holes spotted across both lips (different from and longer lasting than other IVIG brands that caused deeply embedded sores with scabs)

» May 10, 2018 I am infused at a rate of 425 ml per hour and feel no different than at my previous max of 150 ml and May 21, 2018 I am beginning to think that Panzyga is actually having a positive effect even in reducing pain.

» June 2018 I began I three-month trial of very high "pulse-dose" dexamethasone corticosteroid aimed at suppressing the adverse effects of IVIG in general. The dexamethasone was highly disorienting.

» June 7, 2018 I was in for the Panzyga infusion in a an utter daze, then to boot infused at the high rate of 610 ml per hr. The weired dazed feeling stayed with me the whole day.

» July 5, 2018 - Mid-point in Panzyga drug trial: No change NCS Nerve Conduction Study leg & arm test stable.

» July 5, 2018 - High Infusion Rate at 606 ml per hr today was just fine. Indeed, I am beginning to think that high infusion rates are a significant advantage as I feel noticeably better with the shortened infusion time!

» August 31, 2018 - I continue to be quite impressed with Panzyga. My infusion this day was three days late (over the standard 28 days) and as a result I had been experiencing daily elevated numbing, cramping and pain. But during, certainly by the end of the infusion, I felt noticeable relief and the next day much improved in general.

» November 23, 2018 - I had my last Panzyga IVIG infusion and two weeks later the final NCS evaluation (which showed I had remained stable during the year trial of Panzyga). I would rank Panzyga as among the best I have had.

» December 12, 2018 - IMPORTANT side-comment: The very high infusion rates are an advantage - contrary to what I had been told and thought before I tried 606 ml per hr!

Key concepts for My CIDP log for Panzyga IVIG year-long 2018 Clinical Trial. Panzyga IVIG manufactured by Octapharma, IVIG Infusion rates for CIDP experiment, Compare IVIG brands for CIDP, .