Starting another 5 day treatment of IVIg

    • May 1, 2017 at 1:16 pm

      Had my last 5 day treatment from April 1-5. About a week and a half ago, it returned a lot of my strength, reduced my fatigue, and relieved the rundown feeling I had.

      I didn’t get much relief from the numbness, impaired motor control, and pain though.

      My new doctor hopes this round and subsequent maintenance rounds will work on those issues.

      Since I’m going through a different hospital network, I’m getting a different brand of IVIg. It is Privigen distributed by CSL Behring.

      Will or does the brand make a difference?

      I think I’ve had Grifols and Gamunex in the past.

    • May 1, 2017 at 1:36 pm

      One would think it would be like “generic” equivalent, or at least close? I assume that’s (IV of IG) the next thing to try on me. The IV’s of steroid then Aferesis didn’t have any affect. I’ve been diagnosed with Multiple Myeloma & Amyloidosis, as well as CODP & POEMS syndrome. What kinda blows my mind is how they can treat me with IV of IG, when IG is the cancer indicator of myeloma! Weird stuff! Bryan, I pray that the next treatment will You completely restore You! As well as everyone suffering from this awful disease! God bless each & every one of You, in Jesus’ Precious Name, Amen!

    • May 1, 2017 at 3:02 pm

      Here is a comparison of the major brands of Immunoglobulin Products prepared by the Immune Deficiency Foundation:

      Privigen is Intravenous only, no SCIg version. It seems to be low on IGa content, but that could be why it was selected for you. Other forum members have reported good results with it. I hope it works well for you.

    • May 1, 2017 at 4:15 pm

      So, still here at the “new” infusion center. Going on 4+ hours.

      Last place I was done in 2.5-3 hours. The nurse said slower is better and allows IVIg to be absorbed better. Said can’t believe they administered that fast.

      Thought I had read slower is better?

    • May 1, 2017 at 4:16 pm

      Thanks Jim for the link.

    • May 1, 2017 at 5:51 pm

      My insurance will only cover Gammunex — the only gamma infusion in their formulary — but I’ve read some people have fewer side effects if they change branda. I talked today with the nursing supervisor at my infusion service about my terrible headaches, and she suggested changing brands and offered to try to get me an exception from the insurance company. I don’t believe they’ll go for it. But I’m seeing my doctor tomorrow about stretching out my infusions a little so I don’t get hit with 5 huge dooses on consecutive days. I’m also getting a different nurse because the one who did my first two rounds just can’t deal with my small veins.

      Good luck with your treatment!


    • May 1, 2017 at 6:25 pm

      BTW, I only learned a few days ago that the infusion fluid is supposed to be brought to room temperature before being administered. My nurse has been giving it to me ice cold, straight out of the fridge.

    • May 1, 2017 at 9:45 pm

      Bryan, I never had IVIg go that long. Are you on an IV, PICC, or port line? IV is the slowest. But it’s better for those that might be subject to AMS. The best alternative, for those that can give it to themselves, is SCIg.

    • May 5, 2017 at 4:53 pm

      Finished up the IVIg treatment today. The slower infusion rate definitely made a difference in terms of how I felt after each session.

      The faster rate I dealt with in early April, which was 2.5-3 hours, left me feeling drained and exhausted.

      With the 4-4.5 hour sessions, I felt perfectly fine at the end of the treatment.

      Now I’m hoping that I see some great results in terms of my symptoms by the end of next week : )

    • jk
      May 5, 2017 at 8:06 pm

      My infusion rate sorted itself out. If the rate left me finished in 3 hours, or less, I experienced headaches immediately, and then almost everyday until the next infusion. Loading up on water the day before and the day of treatment, in conjunction with an NSAID and some Benadryl combined with a titrated rate calculated to end in 4 hours reduced the headaches.

      My prescription included all the above, at my request.

      Of course, how long it takes is directly correlated to the total amount infused and the rate. Some people get a lot, some get less. From the gamunex-c website:

      “It is recommended that the initial infusion rate be used for the first 30 minutes. If well tolerated, the rate may be gradually increased to a maximum of 0.08 mL/kg per minute (8 mg/kg/min).”

      Note the fine print “…if well tolerated.” So, decide if you are tolerating the rate.