My Intravenous Immunoglobulin IVIg Treatment for CIDP -Results of Continuous Monitoring of IVIG Infusion Effectiveness

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In July 2013 I am having a second round of IVIg infusions to treat my CIDP. This will last for eight months: I will receive two booster infusions followed by monthly repeats though March 2014 - each a dose of 65 g of 10% IVIG solution (620 mL volume). I gladly accepted the first round in 2011 in preference to the alternatives as I believe IVIg to be the most effective treatment for CIDP and also understood that it has few, if any, long term side-effects. As it turns out my first IVIg round was pleasantly helpful in stopping the most debilitating symptom - near-fainting episodes - and some of the internal (sensory) wave-trembling and the severity of the fasciculations (muscle twitching). Overall I felt much better and stopped feeling my life was threatened by CIDP.

 

Now in mid-2013 I have a troubling breathing problem which I believe is again life threatening (although my neurologist says it is not). I am very anxious to find out whether the IVIg can stop the breathing problem and indeed hopefully return me to normal. Despite by doctors sayng that CIDP is not the cause, rehabilitating my breathing is my key objective although I also hope that the other new symptoms such as left leg control-loss and muscle pain will also mitigate or end. Other symptoms that I have borne for a few years now are also very troubling and of course I hope they will be significantly alleviated. As a 20 year veteran of 10k running (slowed about 20% and reduced to 8.5k due to the breathing issue) I have a very good way of testing IVIg effectiveness. So on this page I will log (I expect for a full year updated monthly) my assessment of the most Troubling & Intrusive of my current CIDP symptoms using the current assessment July 2013 as the calibrating baseline.

 

Summary 2013-14 IVIG Infusion Results (as at end IVIG Mar 2014)
» Radical improvement in eye issues - huge reduction in eye wave / vibration
» Big reduction in all fasciculations both motive (visible) and sensory (eg. whole body vibration feeling)
» Significant lessening of cramping - frequency of severe cramps diminished (pain remaining at lower level)
» Noticeable recovery in breathing control - severity of gasping events reduced
» REMARKABLY my improvement measurably continues quite strongly AFTER THE INFUSIONS END
» By May 2014 also very significant breathing improvement in running 10k even with pace close to normal
» Thankfully huge dampening of the horrible whole-body "electrified vibration" feeling
» Clearly overall fundamental positive change although not anywhere near fully recovered
» Also encouraging signs I continue improvement four months after IVIG infusions ended as at end-June 2014
» October 2014: Plateau reached - No continuing improvement - Some minor deterioration (eg. leg pain)

» March 2015: New round of IVIG is prescribed - I will be tracking results on this website

cidp-log-ivig-effect

My monthly log evaluation will be made on the day of my infusions slated for the first week of each month for another six months, starting July 18, 2013, and a daily update given in the table beyond:-

IVIG Effective Monthly June 2013-August 2014 for most Troubling & Intrusive CIDP Symptoms
                                       
  Symptom Complaint  Issue base IVIG Infusion Date* 2014 > No  IVIG  
   Symptom detail Weight Jul-18 Sep-11 Oct-09 Nov-06 Dec-04 Jan-08 Feb-05 Mar-05 Apr-02 May-05 Jun-15 Jul-05 Aug-01  
          G G P G P P P G            
1 Breathing Issue 10 IIIII IIIII IIIII IIII III III III III III II II II I
 - points breathing average 35 30 38 27 20 20 23 22 23 19 16 15 12
breathing index 100% 85% 107% 77% 58% 57% 64% 61% 65% 53% 46% 43% 35%
1 punched-in-stomach 2 iiii iii iiii iii ii ii iii iii iii iii iii ii ii
1 relaxing 1 iiii iii ii ii ii ii ii ii ii ii i i i
1 lean forward 1 iiiii i iiii ii ii ii ii ii iii ii i i i
1 sleeping 1 iii iii iii ii ii ii i i ii i i i i
2 gasping events 1 iii iiii iiii ii ii iii ii ii ii i i i i
2 running 3 iiii iiii iiiii iii iii ii iii ii ii ii i i i
2 left up diaphragm pain 1 iii i ii iii ii ii ii iii iii iii ii iii ii
2 Both legs solid-cramps 4 IIII IIIII IIII III II II III III II II II II II
3 Disorientation Wave 2 III III III II II II II I II I I I I
4 Left Leg Use Issues 1 III III III II II II I II II I I II II
5 Eye Wave / Vibration 3 III III II II I II II I II I I I I
6 Fasciculation's 3 IIIII IIIII IIII III II II II II II I I II II
7 Daily Sea-Sick Feeling 1 III II I II I I I I 0 0 0 0 0
8 Digestive Discomfort 1 II I I I I I I I I I I I I
9 Balance Issue Severity 4 III III III II II II II I II I I I II
# Near Fainting  1 I I I I 0 0 0 0 0 0 0 0 0
▓ OVERALL POINTS 30 IIIII IIIII IIIII IIII II III III II II II II II II
 - points average 99 99 99 70 53 59 58 54 50 42 40 42 40
index 100% 100% 100% 71% 53% 60% 58% 54% 50% 43% 40% 42% 41%
  Issue Severity:    Not significant  = 0   to   Maximum negative impact = IIIII          
* Two booster infusions + seven monthly of 65 g of 10% IVIG solution (620 mL volume)

 

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NOTE: I am making the following notes as soon after the event as possible so that it is fresh in my memory. I have tried to separate the CIDP induced event from the side-effects of the IVIG infusion, but this is not always easy as for the first ten days following the infusion I do feel more unwell than usual. For more on my side-effects of IVIG please view My IVIG Drug Trial for CIDP link. Once a note is made I do not change it so that I have as an accurate and timely record of what has happened.

 

March 5, 2014 - April 2, 2014 Infusion Eight: Two weeks have passed since my eighth and last IVIG infusion. I feel now that my improvement continues slowly and my biggest concern is will this trend continue or will I see a long term decline without any treatment. I have had my ups-and-downs but the ups are higher and the downs less deep. Today March 18, I feel quite good although a little disoriented. Ending the eighth infusion feeling better but troubled by incomplete recovery from breathing issues and increasing pain / weakness in abdomen.

IVIg Effectiveness Day-Log Infusion Eight: March 5, 2014 - April 2, 2014
                                                                     
  Symptom Complaint  March Apr  
   Symptom detail on date: 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 1 2  
  end of day: 0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28  
                                                                   
1 Breathing Issue 2 2 2 3 3 2 2 2 2 2 2 2 2 2 2 2 2 2 2 3 3 2 3 2 2 2 2 2 2
1.1 punched-in-stomach 2 2 2 2 3 2 2 3 2 2 2 2 2 2 2 2 2 2 2 5 3 3 3 3 3 3 3 3 3
1.4 sleeping 1 2 4 3 4 1 1 1 1 1 1 3 2 1 1 1 1 1 1 3 1 1 2 1 1 1 1 1 1
1.6 gasping events 2 3 3 3 4 2 3 2 2 1 2 1 1 1 1 2 2 4 1 4 1 1 3 1 1 1 1 1 1
1.7 running 2 -  - 2 4 - - - - - - - - - - - 2 3 - - - - - - - - 2 2 -
1.8 left diaphragm pain 3 3 3 3 2 2 2 2 2 1 1 3 3 2 1 1 2 2 2 3 3 3 3 3 3 2 2 2 2
2 Legs solid or cramp 3 3 3 2 3 2 1 1 1 2 3 2 1 1 1 2 2 2 2 2 2 2 2 2 1 1 1 1 1
3 Disorientation 1 1 1 1 1 1 1 1 1 1 1 1 1 3 1 1 1 1 1 4 2 2 3 3 1 1 1 1 1
4 Left Leg Use Issues 2 2 2 2 3 3 3 2 2 2 3 3 2 1 1 1 3 3 2 2 1 2 2 3 1 1 1 1 1
5 Eye Wave / Vibration 1 1 2 2 2 2 2 2 2 2 2 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1
6 Fasciculation's 2 3 2 2 2 2 2 2 2 2 2 1 1 1 1 1 1 1 1 1 2 1 2 1 1 1 1 1 1
7 Sea-Sick Feeling 1 0 1 0 1 1 0 1 0 0 0 0 0 0 0 0 0 0 0 2 1 0 0 0 0 0 0 0 0
8 Digestive Discomfort 1 1 1 1 1 1 0 1 0 0 0 0 0 1 0 0 0 1 0 3 1 0 1 1 3 2 2 2 2
9 Balance Severity 1 1 1 1 2 1 0 1 1 1 1 1 1 3 1 1 1 1 1 3 2 2 2 3 1 1 1 1 1
10 Near Fainting  0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 3 1 0 1 1 0 0 0 0 0
▓ OVERALL LOG  2 2 2 2 3 2 2 2 2 2 2 2 2 2 2 2 2 2 2 3 2 2 2 2 2 2 2 2 2
  Issue severity:   Not significant  = 0   to   Max negative impact = 5   Gamunex infused at 150 mL/h max  
IVIG Side-effects & Unexpected (0 - 5)
Lip blister-scab 0 0 0 1 1 1 3 1 2 3 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
Mouth sores 0 0 0 1 1 1 1 1 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
Feeling Tired 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
Body rash-scabs 0 0 0 1 1 1 1 1 3 4 4 5 5 4 3 3 2 2 1 0 0 0 0 0 0 0 0 0 0
Treatment (number taken or applied)
Benadryl regular pills 2 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
Benadryl as mouthwash 4 5 5 3 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
Abreva lip cold sore balm 5 5 5 5 2 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
Low dose Aspirin 2 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 1 3 0 0 0 0 1 1 0 0 0 0 0
end of day: 0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28

 

 

February 5, 2014 - March 5, 2014 Infusion Seven: Starting the seventh IVIG infusion, I feel that overall good things are happening although by breathing improvements have stalled. On the key measure of "ability to run 8.5 km" I find I have to keep a slow pace with no potential for increased speed as I would risk a breathing seizure. BUT on the positive side I find breathing CONTROL has strengthened and strangely also my eyesight. I find I fair better without my glasses (other than reading) and the eye / vision "vibration" has subsided. My balance control is enhanced without glasses. I am beginning to theorize that sustained IVIG may aid in the restoration of the body fundamentals. On February 15, 2014 I had a particularly strong breathing "reset" : during normal breathing an inexplicable unnecessary catch-breath inhale event. This left my diaphragm-abdominal muscles quite sore. It is this type of out-of-the-blue incident that is still worrying as it might indicate that the the chance of breathing arrest still exists. Otherwise I feel I am continuing the slow but sure fundamentals improvement especially that my control is getting quite good again.

A troubling set-back february 19, 2014: After waking from a snooze on the couch I had an indication (based on my previous experience) of the start of a breathing seizure . This is sudden difficulty in breathing BUT focused on centre of the chest: fortunately I quickly regained control and nothing happened. [This reminded me that in march 2014 I will be having two special MRI's - whole abdominal + heart - and perhaps this will find something physical that is causing my breathing difficulties]. February 22, 2014 I had a good run although slow. About 15 minutes after the run I suffered a a breathing event and was seriously out of breath for ten minutes. During this it feels like I have been punched in the stomach and I am beginning to think that somehow I had swallowed a huge amount of air which could exacerbate the breathing problem. This downward trend seems to be continuing February 28, 2014.

 

In summary for this period seven ending March 5, 2014 is on average I have shown a continual but gradual fundamental improvement with a small 5 percentage points decrease in the "Overall Log" index. The same for the breathing component which although stable is displaying troubling signs - increased abdominal weakness, pain and punched-in-stomach feeling.

 

IVIg Effectiveness Day-Log Infusion Seven: February 5, 2014 - March 5, 2014
                                                                     
  Symptom Complaint  February March  
   Symptom detail on date: 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 1 2 3 4 5  
  end of day: 0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28  
                                                                   
1 Breathing Issue 2 2 2 2 2 2 2 3 2 2 2 2 2 2 3 3 2 2 3 2 3 3 3 3 3 3 3 3 2
1.1 punched-in-stomach 3 2 3 3 2 2 2 3 2 2 2 2 2 2 2 3 2 2 3 2 3 3 3 4 3 2 3 2 2
1.4 sleeping 2 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 4 3 2 2 1 1 1 1 1 1 2
1.6 gasping events 2 1 2 1 3 3 3 3 2 1 4 1 1 2 4 2 2 5 3 2 2 2 2 2 2 2 2 2 2
1.7 running 3 - - - - - - - - - - - - - - - - 1 3 - - - - - - - - - -
1.8 left diaphragm pain 2 3 3 3 2 2 3 3 3 3 2 1 1 1 3 2 2 3 3 3 3 4 3 3 3 2 3 3 3
2 Legs solid or cramp 3 3 3 3 2 2 3 3 3 3 2 2 2 2 3 2 3 2 2 2 2 2 2 3 4 3 3 3 3
3 Disorientation 2 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 2 3 3 2 2 1 1 1 1 1
4 Left Leg Use Issues 1 1 1 1 1 1 2 2 2 2 2 1 1 1 3 2 3 3 4 2 1 1 1 3 4 3 3 3 3
5 Eye Wave / Vibration 2 2 2 2 2 1 1 1 1 1 1 1 1 1 1 1 2 2 2 1 1 1 1 1 1 1 1 1 1
6 Fasciculation's 2 3 2 3 2 2 3 3 3 3 2 1 1 2 2 2 3 2 3 2 1 1 1 1 2 2 2 3 2
7 Sea-Sick Feeling 1 0 1 0 0 0 3 2 1 1 0 0 0 1 1 1 1 1 1 2 2 3 1 2 0 0 0 0 0
8 Digestive Discomfort 1 1 1 1 0 0 0 0 0 0 0 0 0 0 0 1 1 1 2 2 2 3 2 4 2 3 2 2 2
9 Balance Severity 2 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 3 2 2 3 2 3 1 1 1 1 1
10 Near Fainting  0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 1 1 2 1 2 0 0 0 0 0
▓ OVERALL LOG  3 2 3 3 2 2 2 2 2 2 2 2 2 2 2 2 2 2 3 2 3 3 3 4 3 3 3 3 2
  No impact = 0 to Maximum negative impact = 5   Privigen infused at 150 mL/h max  
IVIG Side-effects & Unexpected (0 - 5)
Lip blister-scab 0 0 1 1 2 3 3 4 5 4 4 3 3 3 3 3 2 1 0 0 0 0 0 0 0 0 0 0 0
Mouth sores 0 0 1 1 1 2 3 2 2 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
Feeling Tired 0 3 3 3 1 0 3 1 0 0 0 0 0 0 0 0 0 0 0 0 4 0 0 0 0 0 0 0 0
Body rash-scabs 0 0 0 0 0 0 1 1 1 1 2 3 3 3 4 4 3 3 2 2 2 1 1 0 0 0 0 0 0
Treatment (number taken or applied)
Benadryl regular pills 2 3 3 3 2 2 2 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
Benadryl child mouthwash 2 5 4 4 5 5 4 4 2 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
Abreva lip cold sore balm 2 5 5 5 5 5 3 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
Low dose Aspirin 2 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 1 0 0 0 0 0
end of day: 0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28

 

January 8, 2014 - February 5, 2014 Infusion Six: In the new year 2014 I am finding that I have had about a 40% improvement in my overall symptoms. Indeed the same proportional improvement is noted for my breathing. While encouraging I really need a total 100% cure for my breathing otherwise I remain fearful of a life-threatening breathing seizure. In the first ten days after this six infusion I feel I have hit somewhat of a plateau. I have felt generally okay but today January 17, 2014 I feel a strong feeling of being punched-in-the-stomach. And also I get clear indications that my whole abdominal area is weak and sagging causing me to feel uneasy with breathing. This attack came on suddenly and may only last the day. The attack lasted one day but there is now increasing evidence that my entire abdominal area is weakening. Sometimes I have difficulty completing a sentence as I am out of breath.
In the last week January 19-29, 2014 I took a holiday in the sun at Turks & Caicos - lots of relaxation & (running) exercise. I was hoping this would speed up the impact of IVIG and my recovery. Sadly this did not happen and indeed I felt no improvement, my breathing during the running was labored and my "punched-in-the-stomach" feeling intensified.

 

IVIg Effectiveness Day-Log Infusion Six: January 8, 2014 - February 5, 2014
                                                                     
  Symptom Complaint  January 2014 February  
   Symptom detail on date: 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 1 2 3 4 5  
  end of day: 0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28  
                                                                   
1 Breathing Issue 2 2 3 2 2 3 2 2 2 2 2 3 2 2 4 3 3 3 3 2 3 3 3 3 3 3 2 2 2
1.1 punched-in-stomach 2 2 3 3 2 3 2 2 2 5 3 5 2 3 4 3 5 4 3 2 3 3 3 4 3 3 2 1 1
1.4 sleeping 2 2 1 1 1 3 1 1 1 1 1 1 3 2 2 1 1 1 1 1 2 1 2 3 2 1 1 1 1
1.6 gasping events 3 2 3 3 2 3 2 2 3 2 2 2 2 2 3 2 2 2 3 2 3 2 3 2 1 1 1 1
1.7 running 2  -  -  - 2  -  -  -  -  -  -  -  -  -  - 4 4 2  - 2 3 2  -  -  -  -  -  -  -
1.8 left diaphragm pain 2 2 3 3 2 3 1 1 2 3 2 3 2 2 3 3 3 3 2 2 3 2 3 3 3 3 3 2 1
2 Legs solid or cramp 2 2 2 3 2 2 2 2 3 2 2 2 2 2 3 2 2 2 2 2 3 2 3 3 5 4 2 4 3
3 Disorientation 2 1 1 1 1 3 2 1 2 4 2 1 2 2 2 2 2 1 1 1 1 1 1 1 2 3 2 1 1
4 Left Leg Use Issues 1 1 1 3 2 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1
5 Eye Wave / Vibration 2 2 3 2 2 2 2 2 2 2 2 2 2 2 2 2 2 2 2 2 2 2 2 2 2 2 2 1 1
6 Fasciculation's 2 2 4 4 3 2 2 2 2 2 3 3 2 2 3 2 2 2 2 2 2 2 2 2 2 2 2 2 2
7 Sea-Sick Feeling 1 0 0 0 1 0 0 0 0 2 2 2 1 1 1 1 0 0 0 0 0 0 1 3 3 2 1 0 0
8 Digestive Discomfort 1 0 0 1 1 1 1 0 0 2 3 4 2 1 0 0 0 0 0 0 0 0 1 2 2 2 1 0 0
9 Balance Severity 2 1 1 1 2 3 3 2 1 3 2 1 1 1 1 1 2 2 0 0 1 0 2 3 3 3 3 1 1
10 Near Fainting  0 0 0 0 0 0 0 0 0 0 0 1 0 0 2 0 0 0 0 0 0 0 0 0 0 0 0 0 0
▓ OVERALL LOG  2 2 3 3 2 3 2 2 2 3 2 3 2 2 4 3 3 3 2 2 2 2 2 3 3 3 3 2 2
  No impact = 0 to Maximum negative impact = 5   Privigen infused at 150 mL/h max  
IVIG Side-effects & Unexpected (0 - 5)
Lip blister-scab 0 0 1 1 2 3 3 3 4 3 4 3 4 5 4 4 4 3 3 2 0 0 0 0 0 0 0 0 0
Mouth sores 0 0 1 1 2 3 3 2 2 2 2 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
Feeling Tired 0 0 0 0 1 1 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
Body rash-scabs 0 0 0 0 0 1 1 1 1 1 2 3 3 4 5 4 3 3 3 3 3 3 2 2 2 2 1 1 1
Treatment (number taken or applied)
Benadryl regular pills 4 2 2 2 2 2 1 1 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 2
Benadryl child mouthwash 2 2 2 0 3 3 1 1 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
Abreva lip cold sore balm 5 5 5 5 5 5 4 4 4 4 1 1 2 3 3 2 0 0 0 0 0 0 0 0 0 0 0 0 2
Low dose Aspirin 2 0 1 0 1 1 0 0 1 0 2 0 0 0 0 1 0 0 0 0 1 1 2 0 0 0 0 0 2
end of day: 0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28

 

December 4, 2013 - January 8, 2014 Infusion Five: Since November I seem to be making good progress with my breathing issue slowly abating. My breathing when running (a major yardstick) is getting easier. I notice recently that after the first km my breathing is less labored. If this trend continues I will be very happy but I have had downturns before and need to see what happens in the next two months. On the second day into this period I feel good with minimal side-effects. Due to the side-effect reaction to my last IVIG infusion, I requested a much slower rate of 150 mL/hr. In addition I was given a Privigen which seems to be better for me on side-effects. Last night December 22, 2013 I had a bad night on account of breathing difficulties especially while trying to get to sleep. My diaphragm was heavy and I felt I had stopped breathing and had difficulty swallowing. I had several breathing mini-gasps (a sort of twitch that resets my breathing system). I also had a stiff neck, tight abdominals and my nose passages suddenly blocked and lasted for about fifteen minutes. I was up several times and took one low dose aspirin. This morning December 23, 2013 my low level diaphragm discomfort continues and it is clear I am in a CIDP down cycle. I came back recovering quiet well in the last week of this period.

In summary for this period five ending January 6, 2014 is I had a strong improvement in breathing while running - very encouraging. Unfortunately other breathing issues got worse so that combined breathing issues were unchanged. Other issues remained mostly stable except near month end when I deteriorated so I ended the month on average with an increase in bad points from 53 to 59.

 

IVIg Effectiveness Day-Log Period Five: December 4, 2013 - January 8. 2014
                                                                                   
  Symptom Complaint  December 2013   January 2014  
   Symptom detail on date: 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 1 2 3 4 5 6 7 8  
  end of day: 0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35  
                                                                                 
1 Breathing Issue 2 2 2 2 3 3 2 3 2 2 3 2 2 2 2 2 3 3 3 4 3 3 2 2 2 2 2 2 2 2 2 2 2 2 2 2
1.1 punched-in-stomach 2 2 2 2 2 3 2 2 2 2 3 2 2 3 3 3 3 2 3 2 2 2 2 2 2 2 2 2 3 2 2 3 2 3 2 2
1.4 sleeping 1 1 1 1 1 1 1 3 2 2 2 2 2 2 2 2 2 3 3 5 4 3 2 2 2 4 3 2 1 1 4 2 1 1 3 1
1.6 gasping events 2 3 4 2 4 3 2 3 2 2 3 2 3 2 2 2 4 3 4 4 3 3 2 2 3 3 2 1 2 3 2 2 1 3 2 1
1.7 running 3  -  -  - 2 2  -  -  -  -  -  -  -  -  -  -  -  -  -  -  -  -  -  - 1 2  -  -  -  -  - 1  - 1  -  -
1.8 left diaphragm pain 2 3 2 2 2 3 2 2 2 2 3 3 3 3 2 2 2 2 3 3 3 2 2 2 2 2 2 2 2 2 3 3 3 3 3 3
2 Legs solid or cramp 2 3 2 3 2 2 2 3 2 2 2 2 2 2 3 3 3 2 2 2 2 3 3 3 3 2 2 2 2 3 3 3 2 1 1 1
3 Disorientation 1 1 1 2 2 2 2 2 1 1 1 2 3 3 3 3 3 2 3 2 2 2 2 2 2 2 2 2 3 1 1 1 1 1 1 1
4 Left Leg Use Issues 1 1 1 2 2 2 1 2 1 1 1 1 1 1 2 2 2 2 2 2 1 1 1 1 1 1 1 1 1 1 1 2 1 1 1 1
5 Eye Wave / Vibration 2 2 2 3 2 2 2 3 2 2 2 2 2 2 2 2 2 2 2 3 2 2 2 2 2 2 2 2 2 2 2 2 2 2 2 2
6 Fasciculation's 2 2 2 3 2 2 2 3 2 3 3 2 2 2 2 2 3 3 2 3 2 2 2 2 2 2 2 2 2 3 3 3 3 2 2 2
7 Sea-Sick Feeling 1 1 2 1 1 2 1 1 1 1 2 2 2 3 3 2 2 2 1 1 1 1 1 1 1 0 0 0 1 0 0 0 0 0 0 0
8 Digestive Discomfort 1 1 0 0 0 1 0 1 0 1 2 1 2 2 2 1 1 1 1 0 0 1 1 1 1 1 0 0 1 2 0 2 2 4 2 1
9 Balance Severity 2 2 3 3 3 3 2 2 1 1 2 2 2 4 4 3 4 3 3 2 2 2 2 2 3 4 3 2 2 2 2 2 2 2 1 1
10 Near Fainting  0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
▓ OVERALL LOG  2 2 2 3 2 3 2 3 2 2 2 1 2 3 3 2 3 2 3 3 3 2 2 2 2 2 2 2 2 2 2 2 2 3 2 2
  No impact = 0 to Maximum negative impact = 5                       Privigen infused at 150 mL/h max    
IVIG Side-effects & Unexpected (0 - 5)
Lip blister-scab 0 0 0 1 1 1 1 2 2 2 2 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
Mouth sores 0 0 0 1 1 2 2 2 2 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
Feeling Tired 0 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
Body rash-scabs 0 0 0 0 0 0 1 2 2 3 3 3 2 2 2 1 1 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
Treatment (number taken or applied)
Benadryl regular pills 4 2 2 3 2 2 2 2 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
Benadryl child mouthwash 2 5 5 5 5 5 5 5 5 2 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
Abreva lip cold sore balm 2 5 5 5 5 5 5 5 5 3 2 2 2 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
Low dose Aspirin 2 0 0 0 1 1 2 1 0 0 0 0 0 1 0 0 0 0 1 0 1 0 0 0 2 0 0 1 0 1 0 1 0 1 0 0
0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35

 

November 6, 2013 - December 4, 2013 Infusion Four: I am feeling quite good going into the Fourth Period hoping that I will make further progress - especially in my breathing. At the end of the period I feel overall that my improvement trend continues. There is progress mostly on the non-breathing related symptoms, but my breathing too improved moderately especially when running. The coronary angiogram I had November 26, 2013 showed that my heart arteries were in good shape and the slight weakness I had in one of the heart ventricles was not likely to cause my breathing problem. This is somewhat confirmatory that my breathing issues are caused by CIDP.


Again I have had a stronger adverse reaction to the IVIG with the bad mouth sores spreading from my inside cheeks to the top-and-back of my throat (red with big blistery white patches) by day ten. I am treating this with Benadryl tablets and children benadryl liquid as a mouthwash. I decided to make sure I am infused at a lower rate than the 200 mL/hr maximum for my weight of 65 kg. Also I will track the brand of IVIG as in this period I had Gamunex. I hope the IVIG side-effects are less next period because overall I think my CIDP symptoms are abating somewhat.

 

October 9, 2013 - November 6, 2013 Infusion Three: Third session began after a month of little progress. In the first week I experienced higher than normal adverse reaction to the IVIG with bad mouth sores in the first ten days followed by a body rash in the following ten days. October 22, 2013 I failed the cardio stress test (the second time) and have been scheduled for a coronary angiogram November 26, 2013. Entering my last week of Period Three I do not feel well: By breathing issues are serious and I find it difficult to carry the groceries. This five day downward spiral - characterized by strong feelings of being punched in the stomach - left me feeling I was going to keel over and collapse or even worse! However, after a equally strong improvement in the last week, my overall evaluation as at period ends is quite positive in that I show a 66 %-points on an index I have developed. Most encouraging is that on average for the period my breathing improved moderately.

September 11, 2013 - October 9, 2013 Infusion Two: As I begin the second session, I feel that my situation improved only modestly in Period One and that it would have been better had there not been the month delay - gains that were made were lost as a result. On the day of my second-period infusions I had acute leg fasciculations and pain working hard through movement / stretching to avoid the dreaded cramp. However, moving on the situation much improves - seems like the IVIG short-term effect is quite immediate for me. I decided not to run much during this period due to the serious breathing issue I had on a run September 1, 2013. Nevertheless I did not experience any improvement in breathing and indeed feel that my diaphragm and abdominal muscles overall may be getting weaker. (Perhaps this was due to minimal running?) Indeed, I am thinking that the reduced exercise was counterproductive and could have caused my lack of overall progress over the period. I intend to restart my usual running program for the next period.

After twelve days the "side-effects" of the IVIG have subsided and I feel the benefits of IVIG. I feel remarkably good with nearly all the symptoms hugely alleviated. My breathing is better but my diaphragm muscles front through back are painful and feel tight. I feel that the pain is a sign that IVIG is working.

 

July 18, 2013 - September 11, 2013 Infusion One: On the day and immediately after my July 18-19, 2013 IVIG "loading" infusions I have suffered significant intensive pain in the usual CIDP induced places especially my diaphragm and back. However, on the third day there was a turnaround and since I have felt an improvement. My breathing issues got better as did my over-all energy. The main negative starting day six is increased cramping of both legs despite extra stretching. It is early days but overall I am pleased with the positive signs of progress, although coming up to day-12 I am having some breathing-difficulty attacks. Some of the immediate improvements have been set-back somewhat as I enter the fourth week. Both legs are an increasing problem with fasciculations and cramping. Adding to my diaphragm issues my whole abdominal area is becoming more involved. September 1, 2013 I suffered a dreaded diaphragm muscle seizure while on a run and I almost lost consciousness - quite a setback. The side-effects of IVIG have been mouth and lip eruptions that I have successfully managed with benadryl (one pill per day for ten days then only child liquid for mouthwash no swallow) and Abreva cold sore lip balm.

Meantime I have learned that there has been an admin error (all on vacation) in scheduling my next IVIG infusion was delayed to September 11. This is quite disconcerting and I wonder how this could set-back the effectiveness of the six month round of infusions. That will make it about 25 days late and I have already seen a significant deterioration in my symptoms.

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