My IVIG Infusion Log for CIDP commencing March 26, 2015

In March 2015 I began my third round of immunoglobulin IVIG infusions to treat my CIDP as I have new upper body issues including some arms & hand weakness, swallowing, voice issues and deterioration in my breathing respiratory issues. As in my previous 2013-2014 round of IVIG, I will record the impacts (although this time on a monthly summary basis). I received two booster infusions last week March 2015 followed by four monthly repeats though July 2015, continuing through October 2015 at three week intervals - each a dose of 70 g of 10% IVIG solution.

 

Since my last infusion a year ago on March 5, 2014 my CIDP continued to improve reaching a plateau by October. Moving into 2015 I began to deteriorate and by February 2015 I felt I was sliding fast with the return of my serious CIDP induced leg pain/cramps and balance problems followed by the beginning of new upper-body issues. Here are the results so far -

Summary IVIG Infusion Results March - September 2015
» Deterioration of new developing issues continues after 1st infusion March 26 through April 27, 2015
» Stabilization occurred after 2nd infusion of April 27, 2015 old issues and some new issues improved
» Most symptoms abate significantly as a result of 3rd IVIG infusion May 27, 2015, including breathing
»There was no measurable improvement as a result of the 4th infusion June 24, 2015
» At IVIG infusion end July 2015, some new issues initially abating in May reverse and regress june-july
» A notable negative event July 17-21, new left leg numbness and noticeable thigh weakness (during run), also voice/swallow/throat difficulties with breath discomfort - such a serious event has been very unusual for me (and should not happen) during an IVIG round
» As at July 21, 2015 there was importantly a 38% point improvement overall as a result of this 2015 IVIG round which is about the same as the previous 2013-2014 IVIG Campaign I had

» The older the issue the greater the improvement as a result of IVIG - "new-2015" issues improving the least

» Mid-July my doctors say my hand weakness is signs of CIDP worsening, so IVIG infusions ordered to continue with booster July 29&30, 2015 BUT I will be entering the IgPro20 worldwide drug trial
» July 29, 2015 Privigen IVIG booster infusion 140 g is received entering the stabilization period of the IgPro20 trial.
» In period Aug 19 through Sep 9, 2015 there was a significant deterioration everywhere but especially for new issues and breathing. New Issue Index was 107% meaning I was worse on these than the start in March 2015. The relapse was temporary and may have been a result of the heavy IVIG dosing I was receiving*

» During 2015 IVIG Campaign March 26 through Sep 10th there was a 42% improvement overall in my symptoms measured by the index. The old issues improved the most BUT the new issues remained the same.**

» The 2015 IVIG Campaign ended September 30 and I will switch October 8, 2015 to weekly subcutaneous infusion of CSL Behring Hizentra IgPro20 immunoglobulin, and report on effects at this link.

 

IVIG Impact on My CIDP Symptoms March 2014 and March - September 2015
                             
  Symptom Complaint  2014 2015 2015 2015 2015 2015 2015 2015 2015  
  Gamunex or Privigen infusion date > Mar-14 Mar-15 G G P G P P P  
  RANK symptom detail weight - - 26-Mar 27-Apr 27-May 24-Jun 29-Jul 19-Aug 10-Sep  
                             
1 Breathing Average 6 2.7 2.2 2.5 2.3 1.5 1.6 1.4 2.2 1.2
1.1 gasping events 2 2.2 3.0 3.0 2.2 1.7 1.6 1.2 2.3 1.4
1.2 running 1 2.8 1.5 2.2 2.9 1.2 1.5 2.3 2.6 1.0
1.3 punched-in-stomach 2 2.9 2.2 2.5 1.9 1.5 1.7 1.1 2.3 1.3
1.4 (left) diaphragm pain 1 2.8 2.0 2.4 2.1 1.5 1.6 1.0 1.5 1.2
2 Swallow-throat-voice 2 0 2.0 2.5 1.8 1.2 2.0 1.2 2.2 2.0
3 Legs solid or cramp 3 2.0 4.0 3.7 2.0 1.3 1.7 1.6 3.0 1.6
4 Right Foot Pain 1 0 1.0 3.4 2.4 1.8 1.5 1.2 1.5 1.2
5 Left Leg Use & Pain 1 2.3 3.0 2.8 1.4 0.7 0.9 1.4 2.8 2.6
6 Upper-body Average  3 0 2.5 2.9 2.0 1.6 1.7 1.5 2.5 2.4
6.1 hand pain & weak 2 0.0 2.5 3.2 2.0 1.8 2.0 1.6 2.7 2.6
6.2 arms & shoulders 1 0.0 2.5 2.5 1.9 1.4 1.4 1.4 2.4 2.2
7 Eye Wave / Vibration 3 1.5 2.0 2.8 2.1 1.3 1.9 1.1 1.7 1.1
8 Fasciculation's 3 1.7 3.0 3.4 1.9 1.3 1.7 1.2 2.4 1.6
9 Pressure sensitivity 2 0 2.2 2.2 1.6 1.0 1.2 1.4 2.2 2.2
10 Balance Average 4 1.1 2.3 2.7 2.3 2.0 1.4 1.1 1.5 2.0
10.1 motion difficulty 2 1.5 3.0 3.4 2.9 2.4 1.8 1.4 2.1 2.6
10.2 disorientation 1 1.6 2.0 2.5 2.1 2.1 1.5 1.3 1.8 2.2
10.3 near fainting 1 0.3 2.0 2.3 1.9 1.4 0.7 0.5 0.5 1.1
11 Daily Sea-Sick Feeling 1 0.3 2.0 2.4 1.7 1.2 0.4 0.2 0.7 0.8
12 Digestive Discomfort 1 1.2 1.5 2.1 1.2 1.0 0.9 0.6 1.9 2.0
OVERALL LOG POINTS* 30.00 40.4 74 85.7 60.3 43.2 47.1 37.4 64.5 50.8
 - overall points index % 100% 54% 100% 115% 81% 58% 63% 50% 87% 68%
Breathing Issue Points* 6.00 15.8 14 15.5 13.1 9.0 9.5 8.0 13.4 7.5
 - breathing index % 20% 114% 100% 111% 95% 65% 68% 57% 97% 54%
All non-breathing Issue Points* 24.00 24.6 60 70.2 47.2 34.2 37.6 29.5 51.1 43.3
 - non-breathing index % 80% 41% 100% 116% 78% 57% 62% 49% 85% 72%
New 2015 Issue Points* 8.00 0.0 17 21.7 14.9 11.2 13.4 11.0 18.1 16.8
 - new issues index % 27% 0% 100% 129% 88% 66% 79% 65% 107% 99%
Old pre-2015 Issue Points* 22.00 40.4 57 63.9 45.4 32.0 33.7 26.5 46.4 34.0
 - old issues index % 73% 70% 100% 111% 79% 56% 59% 46% 81% 59%
    Not significant  = 0   to   Max negative impact = 5    * Weighted Points Index 2015 = 100%

 

IVIG Infusion date in red 27-Apr = Actual date of my infusion: So the reporting period say for April 27, 2015 infusion date is for the period from that day forward to the day before the next infusion (that is the period April 27 - May 26, 2015). All data is based on the daily score (1 through 5) assessment record average for the total days in the period. The "points" is the weighted value of score times weight for each CIDP symptom).

 

* Booster Effect: Note however in period Aug 19 through Sep 9, 2015: It is possible that some of the regression decline is not real as the infusion period from July 29th was shortened by one week so IVIG side-effects ( such as flu like symptoms, body rash causing nerve sensitivity, etc) recovery is less due to the shortened recovery period. The side-effects may disguise or hide fundamental CIDP improvements.

** New Issues: These CIDP symptoms became evident by March 2015 and were therefor awarded zero points a year earlier in 2014 and are Swallow-throat-voice, Right Foot Pain, Upper-body Average, and Pressure Sensitivity.