On December 21, 2018 I will take my first Cuvitru 20% sub-q IgG for my CIDP. My previous sub-q trial of Hizentra July 2015 was abandoned due to what I call my overloading of immunoglobulin. Although I do like the convenience of IVIG, I am keen to have a retry of sub-q or scig* as I am hopeful that it will result in a better outcome for my CIDP. My dose this time is increased to 31g or 155 ml per week (versus 26g for Hizentra). The following is my log of my weekly self-infused Cuvitru campaign commencing December 21, 2018 four weeks after my last IVIG infusion (of 70 g Panzyga which I received every four weeks) -
Summary Sub-Q Cuvitru IgG Results Starting December 21, 2018 - through 2020
» December 21, 2018, first infusion of Cuvitru SubQ. Decided with assistance of the nurse-trainer to use four sites (needles) each 9 mm long attached to the delivery line and pump. I infused at close to the max rate allowed by the controller and had hardly any side-effects.
» December 28, 2018, a week later I made some changes in my infusion procedure. I went to gauge 24, 12 mm long needles and slowed the infusion rate a little. I also placed the four needles wider apart. I felt less discomfort although I still have a nighttime cough side-effect which I have to find a way to overcome.
» April 2019: The 12 mm needles proved problematic - too long for my anatomy. On one occasion I think the needle during flow pieced a large vein or maybe even an organ when I stood-up, causing immense pain. I switched back to 9 mm by four site configuration and also place two of the sites in my upper thigh + two in abdomen area.
» April 11, 2019: Up to this point side-effects of SCIG Cuvitru have been minimal but mid-April 2019 I was hit with my dreaded lip-scab issue that continued for the whole month. (My doctor had said this reaction would not occur as it had persisted with IVIG). I am hoping this was a one-off event and that the issue will resolve from this point!
» May 01, 2019: I feel better on Cuvitru sub-q than any of the IVIG campaigns I have had since 2011. With practice I have become quiet expert & very comfortable with self-infusing and prefer this to IVIG. So far so good!
» August 01, 2019: I started getting a rash on my chest & abdomen, and then upper back, neck and even face. This rash progressed to serious stinging red blotches all over the affected area through September. I had difficulty finding places to infuse.
» November 01, 2019: The rash appears to be gradually subsiding from outward to inward but the stinging remains pretty uncomfortable especially on the back of my neck. The rash seems to inflame in the middle of each infusion cycle - around day four in the week. Indeed, my neck feels less controllable and strong and I have increased dizziness by end November.
» December 20, 2019: I am switching brands to Cutaquig Sub-q SCIG IgG. This switch is unrelated to any problems I was having with Cuvitru. However, given the rash issue I am certainly interested in the switch hoping that the rash will disappear more quickly than otherwise.
» December 29, 2019: The switch to Cutaquig did not happen (apparently because there was Cutaquig shortage) and I remain on Cuvitru. Meantime the rash is definitely subsiding - although my neck is still pretty bad - and also I am having somewhat less side-effects (rash and swollen lymph nodes) overall from Cuvitru. My body seems to be adjusting and I do feel quite stable entering 2020: This is not to say progression of my CIDP has stopped or I am in any kind of remission at this time!
» April 23, 2020: I seem to be making steady progress with Cuvitru SCIG. I am have many more good days than bad and the pain is significantly less. I wonder, wonder what is happening!
» September 25, 2020: The rash that started August 1, 2019 did not go away (as I predicted) but rather is causing extreme discomfort (stinging pain, bruised skin and deep red patches) that I am trying three weeks of half-dose to allow my neck and upper chest rash to repair.
» October 12, 2020: Hair Loss from Cuvitru - yes it is true and it took only three months. In the last few months I have lost about 80% of my hair! I did not know that hair loss could be a side effect of Cuvitru (and IgG in general) but there is no doubt that Cuvitru caused my massive hair loss.
» October 12, 2020: Into my third week of half-dose (16 g Cuvitru SCIG per week) aimed at fixing my skin rash and hair loss. My rash shows some improvement, especially the bruising, but it is still pretty bad. I am not able to say whether my hair loss has stopped or slowed. I am thinking that I have reached the limit and must return to full dose (31 g Cuvitru per week) starting this Friday otherwise I could impact by CIDP treatment. (Indeed may have already as last night I was shaking a little)
» October 21, 2020: I have pain in both upper arms / shoulders when I lie down on either side - by morning very bad (making it difficult to sleep). My arm strength seems not affected much as my vigorimeter (L=80 R=87 kPa) dynamometer (L=31 R=36 kg) .
» October 22, 2020: On the advice of my doctors I stopped my weekly CUVITRU scig infusion as the pain in my arms escalated. (My last infusion was October 16, 2020). I am worried that the pain is vascular or some other serious complication, adverse reaction to IgG or SCIG CUVITRU, or maybe actually a progression of CIDP. My doctor will review the situation November 3, 2020.
» November 03, 2020: Doctors believe I am having an allergic reaction to CUVITRU or IgG, and as a result I am off all IgG for at least one month. Instead I will transition to a daily Prednisone dose of 25 mg for November 2020 and have another doctor review in one month.
» February 18, 2020: Nerve conduction study shows improvement, in line with my own feelings. Quite a few negatives including bask of neck and weird brain happenings.
» December 08, 2020: My doctor is uncomfortable putting me back on IgG due to the adverse reaction issue so I will not be resuming IgG any time soon. She has reduced my Prednisone dose to 15 mg per day. I will have a nerve conduction study to see where I am with the CIDP early next year 2021.
* "sub-q" or "scig" = subcutaneous or subcutaneous IgG Immunoglobulin infusion under the skin (versus "IVIG" = intravenous Immunoglobulin infusion directly into a vein) Also see: Summary IgG Infusions Log
investigated in the clinical trial for Chronic Inflammatory Demyelinating Polyneuropathy CIDP IgG skin rash IgG sudden scalp hair loss on head IVIG turn bald.