IVIG roller coaster

    • Anonymous
      June 9, 2012 at 2:50 pm

      Fairly new to this often misdiagnosed disease and wondering if anyone else sees the ups & downs much between infusions. I started having symptoms around August of 2011 went to a family doc with what I thought may have been a couple of pulled or torn muscles ( to much of a gym rat what seems like an eternity ago) after a visit to a Neurologist then multiple trips & tests to Mayo. We settled in on CIDP (ALS was in the mix but probability has greatly diminished(i hope)). Started IVIG in February with 5 days straight of 0.4g/kg then weekly for about 6 or 7 weeks. The rebound was great I went from virtulally unable to walk, buckle my pants, or lift my arms overhead (roughly 20% of normal to walking well and regaining strength to maybe the 50-60 % level. Then we went to bi-weekly in late March and the roller coaster began. The effects deminish about 10 days into the cycle and the day or 2 after the infusion are bad then a rebound and the cycle starts again almost like clockwork. This week was an exception where 12 days after infusion I was back to bad. 2 days later (today) about back to what I’d call fair. Hate this roller coaster! the top never gets high enough & when going down u never know where the bottom is!Fascirculations increase significantly on “bad days”. Anyone else see similar? Does ALS respond at all to IVIG?

    • June 10, 2012 at 2:07 am

      My daughter had the up & down ride for awhile. We finally figured out she needed treatment 3 days before her symptoms showed up. CIDP is attacking your myelin before your symptoms appear.

      At one point she was having symptoms 10 days post infusion. We did a loading dose & then put her on weekly infusions. She did that for a LONG time – about a year. We have gradually moved her infusions apart & she’s now getting them every 5 weeks & we will soon be going to every 6 weeks.

      My recommendation would be to talk to your dr about doing another loading dose (so you can get back to baseline) & then start weekly infusions again. It sounds like your body wasn’t quite ready to go longer between treatments.

      ALS does not respond to IVIG because it is not an autoimmune disease.


    • June 11, 2012 at 4:10 pm

      You sound a lot like myself.. I initally was scheduled to get IVIG every 3 weeks after the loading dose (felt improvement after the first loading dose/however I only had a 3 day loading dose – unsure of the dosage). It REALLY kicked in and I felt AMAZING after that 2nd IVIG.. Anyhow I would feel it start wearing off 10-14 days after the infusions.. and woudln’t know how much I would decline until I got my next infusion.. finally I got a cold from my kids, had a relapse and they moved it up to every two weeks with an increased dosage.. If i don’t get sick from my kids (which I seem to quite often right now).. it lasts me ALMOST the full two weeks.. if I get sick it wears off quickly.. I have only gotten one loading dose… from what I have been reading on here, I may need to get more to get back to where I was that 2nd round.. From everything that I have read ALS/MND does not respond at all to IVIG! Good luck!