My Low "Maintenance Dose" Trial of Intravenous Immunoglobulin IVIg Treatment for CIDP 2016 -
Could a much lower dose work?

February 26, 2016 I had the first infusion of three monthly of low-dose IVIG - only 40g versus 70g usual per month. Surprisingly I also did not get a loading dose . This follows a three month holiday from all immunoglobulin since the Sub-Q trial of Hizentra last year 2015 failed to produce expected results in my situation. I am interested to see what happens to my CIDP symptoms on this low dose and am trying to keep an open mind. I would like to think that I will do well but on the other hand am concerned in particular that my (life threatening) breathing problem may worsen! In any event I will post results on this page starting March 2016.

 

Summary Low Maintenance Dose IVIG 2016
» Few side effects felt the day after the first maintenance dose of Gamunex
» During the first month of low dose, march 2016 , my symptoms stabilized if not somewhat improved
» March 23, 2016 I received an infusion of IGIVnex - a new Canadian manufactured IVIG brand by Grifols Canada Ltd (using a new chromatographic process similar to and said to be interchangeable with GAMUNEX) and am quite interested to learn how I will respond to it

» Three weeks after receiving IGIVnex, April 9, 2016, I find that the side-effects has been more acute than usual. In particular I have lip blisters and scabs, as well as inflamed lacerations inside my mouth, persisting for ten days and also quite a rash on my lower legs
» I had another infusion of IGIVnex April 20, 2016 and hoped that the side-effects would be less acute but they were not, indeed perhaps worse. I am inclined not to accept IGIVnex in future and for me I find it NOT interchangeable with GAMUNEX as claimed (especially considering that the dosage was low too!)
» As at April 30, 2016 I feel adequate but the overall impact of low maintenance dose on my symptoms are (perhaps as expected) so far less effective than the usual full dose (Also see IVIG Therapy Summary)
»
Turns out May 17, 2016 that conductive studies indicate I have not deteriorated in the three months on this low maintenance dose so my CIDP doctors decided to continue this IVIG regimen for another six months at least

» My tracking as of this date May 17, 2016 shows my main index at 75% which is about the same as when I started three months ago, and my hand strength somewhat stronger as well

» I am comfortable with this decision as I am a great believer in the ability of ones body to fix itself - all I need is a little help and I believe that the low dose IVIG may just be what I need for stability of by CIDP

» On June 13, 2016 I restarted the the low 40 g IVIG per month GAMUNEX only for six months (I have found Gamunex best for me - best response and lowest side-effects)

» One day after the infusion June 14, 2016, I have remarkable relief from pain (a major symptom) and feel a whole lot better overall!

» Seems I wrongfully maligned IGIVnex as after two maintenance doses of GAMUNEX I am July 30, 2016 experiencing similar persisting serious lip blisters. My apologies to the suppliers of IGIVnex! I am hoping that my body will adjust over time and this horrible side effect will dissipate.

» My CIDP symptoms at this date remain quite stable commencing August 2016, except that I feel by hands & arms in particular are increasingly painful and weak.

» August 2016 turned out to be a pretty bad month for pain & weakness in my hands & arms. Strength measurements confirmed loss of power in both hands but especially left. Pain was at its worst..

» Mid-October 2016, after my 9th month, I am beginning to question the efficacy of this low maintenance dose - I was expecting to be able to at least have a tolerable level of symptom mitigation if not a gradual improvement. But I am heading sideways overall and my new (since early 2015) upper body issues (especially hands & arms) are getting worse, including measurable declines in my daily hand-strength

» December 6, 2016 the CIDP clinic says conductive studies indicate stability (since March 2016). This should be good news but for me represents a significant disconnect with the symptoms I live with every day. My own tracking (see below) suggest a notable negative uptick in upper body symptoms, including (now unexplained) significant weakness in my hand/arms.

» My IVIG maintenance therapy is to continue - I certainly hope I am wrong on the progression issue.

arm-hand strength for CIDP

>> download CIDP-IVIG-impact-chart-leg-hand-2016-12-11.pdf

 

Concepts for CIDPlog My try at low-dose IVIG for CIDP: Small dose Intravenous Immunoglobulin IVIg Treatment for CIDP: CIDP low dose IVIG effectiveness, efficacy of reduced IVIG in CIDP cases, IGIVnex versus Gamunex or Privigen IVIG comparison low dose versus high dose, trial outcome of IVIG infusion, IVIG therapy options low, medium high dose, est dose level, what is the optimal dose immunoglobulin for for CIDP, cidp worse with ivig high dose or low dose