My CIDP log after IgG CIDP life off IgG Immunoglobulin infusions + Alternative CIDP Treatments for Chronic Inflammatory Demyelinating Polyneuropathy + life-threatening "Mini-Seizures" on Oxcarbazepine :

On 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 take daily Prednisone for November 2020 and have another review then of my CIDP. Prednisone is a corticosteroid (steroid) and used as an anti-inflammatory or an immunosuppressive medication. The adverse reaction to IgG was surprising after eight years of IgG Immunoglobulin infusions for my CIDP Chronic Inflammatory Demyelinating Polyneuropathy. The adverse reaction included deeply bedded stinging rash, almost complete loss of scalp hair (from full head of hair to 10% left) and weird acute pain in the upper arms and shoulders. See Cuvitru IgG Scig for CIDP Log page for detailed description of the adverse reaction to IgG Immunoglobulin.

 

Summary Transition to Life without off IgG Immunoglobulin infusions Starting November 4, 2020 - through 2022

vCIDP on Prednisone November 04, 2020 - February 18, 2021:

» November 4, 2020: After stopping my IgG infusions (last infusion of CUVITRU SCIG IgG was October 16, 2020) I took my first Prednisone pills - 25 mg per day expecting to do this for at least a month.

» November 4, 2020: Within three hours of taking my first dose of Prednisone the pain in my arms

starts dissipating. I go to bed early this night without pain in my arms for the first time since my adverse "allergic reaction" (my doctors' description) to IgG three months ago August 1st, 2020

» November 5, 2020: Wake up next day after transition to Prednisone and amazingly have almost no pain in my arms and even the sting in my neck-face-arms rash is pretty much gone. I am extremely thankful for the relief provided I presume by Prednisone! By the evening I am pleased with the relief from arm pain but on the flip-side I seem to have increase leg-fasciculations and a tendency for leg cramps (the most prominent of my CIDP symptoms

» November 11, 2020: My recovery from the adverse "allergic reaction" to IgG Cuvitru continues with my rash fading fast and I think my hair is growing back too! I feel okay but I am Prednisone dizzy, more unsteady than normal with my CIDP, higher propensity to cramp and have pretty wild (sensory & motor) fasciculations.

» November 26, 2020: I still have red blotches from the rash and have a latent low-level burning in the arms. But fasciculations ( some new like in my back muscled) have notably escalated, and I am shaking somewhat by days end. I am getting muscle freeze in my hands and have to carefully manage cramping everywhere!

» November 27, 2020: A sort of side issue with Prednisone is that reportedly taking it would puts you at added covid-19 coronavirus risk as it dampens the immune system (the opposite of IgG that boosts it). I do have to make hospital visits making it more troublesome for my CIDP management of covid coronavirus.

» November 27, 2020: Sleep disruption is becoming a significant issue as I come out of a second night of only about five hours sleep. Good sleeping helps me control my CIDP symptoms and bad sleep has very much the contrary effect. My CIDP symptoms are worse than ever!

» 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.

» December 30, 2020: I am not doing well on Prednisone. Pretty much every CIDP symptom is considerably worse especially fasciculations, cramping and pain. Some symptoms which have mostly dissipated as of my last nerve conduction study, such as wrist cramping & pain, have returned with vengeance!

» January 11, 2021: My appointment with my CIDP clinic doctors January 11, 2021 was timely and confirmed through NCS I am in bad shape. At my urging and with my doctor's agreement I will be off prednisone within a month. I have taken the AntiMAG test at my request (as I am thinking that being allergic to IgG may point to a diagnosis of Anti-MAG Peripheral Neuropathy)?

» January 12, 2021: I seem to have injured the back of my neck an/or upper spine when reaching high on a shelf. This follows a weird event about two months ago when I had a nerve strike crushing jaws together breaking teeth and removing crowns. I also had an amazing explosive air burst (burp). Both these events were completely involuntary highly disturbing nerve strikes.


v My CIDP with life-threatening Eye-centered "Mini-Seizures" - on Oxcarbazepine October 28, 2021 until now April 2022:

» February 18, 2021: I am off all drugs, and still awaiting my Anti-Mag test result - right now NO TREATMENT for my CIDP!

» March 03, 2021: I tested negative for Anti-Mag: Had it been positive I would have alternative treatment option. Surprisingly I feel okay being off all drugs - maybe my body alone can fix my CIDP?

» October 11, 2021: No such luck for self-fixing. I have spiraled downwards with escalating head issues especially mini-seizures. I am using the term "mini-seizures" as I cannot find any other appropriate term for the episode events I experience. I now consider my situation life-threatening and am seeking medical advice in Portugal firstly from an expert in autoimmune diseases and secondly from a doctor specializing in head issues including cerebral vascular diseases and neuroimmunology.

» October 28, 2021: The specialist in head issues prescribes 300 mg daily Oxcarbazepine (typically used to treat seizure disorders). I have agreed to try the drug for three weeks and November 17, 2021 started with a smaller dose for one week.

» November 20, 2021: I feel relieved that at least I am trying a potential treatment for my head issues but it is early days as to knowing whether it will help

» January 25, 2022: My Portugal doctor mid-January 2022 doubled my Oxcarbazepine to 600 mg daily as the drug seems to be having quite a positive effect substantially reducing the pain in my eyes and very surprisingly strongly suppressing the wild fasciculations not just in my head but also my legs! Also the painful mind waves prior to sleep have been largely eliminated! But the "mini-seizures" are still occurring I believe at about the same frequency, but I am hopeful they will reduce in number over the next month. I await the results of an EEG Electroencephalogram (a recording of brain activity test).

» January 27, 2022: The EEG result came back clear, meaning (apparently) that I am unlikely to be having conventional seizures. However, I am worried about the fact I was already taking the ant-seizure drug Oxcarbazepine so wonder what the EEG result really repents.

» February 12, 2022: After a few weeks of the Oxcarbazepine 600 mg daily dose my "mini-seizures" have greatly dissipated and fasciculations strikingly reduced in my eyes, face and also astonishingly in my legs.

» March 07, 2022: Now most of the mini-seizures have dissipated but the one remaining is highly troubling. When I am resting lying down, eyes closed, my mind/brain blanks-out. NOTHING THERE. However, I seem to be conscious as I instinctively shake (an unconscious reflex perhaps) my mind/brain revives astonished. The world appears brighter and clearer than before - but soon a new headache begins and I experience a horrible day and night often with repeat blank-outs.

» March O7, 2022: I am convinced that my current problems are very much eye-centered and fasciculations as secondary but important. I have had eye (fasciculation} issues even before my CIDP diagnosis March 2009! My CIDP doctors nevertheless say that they are not caused by CIDP but I fear she may be wrong.

» March O7, 2022: I am concerned that these mind-brain blank-outs are life threatening and one day I will not recover and enter a deep mental state of locked-in mind/brain blank (perhaps end-up with locked-in syndrome pseudocoma in a vegetative state). I am seeing my Portuguese doctor soon and will seek his advice.

» March 17, 2022: My Portuguese doctor rejects risk of locked-in syndrome but after blood test reduced my oxcarbazepine dose to 300 mg per day as I had developed a low blood sodium level of 127 mmol/L. [norm is136-145] and precipitous fall from my October 09, 2021 of 141 mmol/L]. Naturally I now worry that my mini-seizures will return

» March 29, 2022: Full night of mini-seizures - more that 30 - until I stopped trying to sleep though fear I was doing permanent damage to my brain. The seizures completely blocked my brain from transcending from relaxed to sleep within about one-minute of closing my eyes

» April 10, 2022: Blood sodium returns to normal. I am awaiting for Canadian (belated) EEG, MRI and neurological consultation respecting my "mini-seizures"

» April 25, 2022: I am relieved that my Canadian neurologist says I can go 145 mg per day of oxcarbazepine but I am not much closer to getting an explanation for my mini-seizures. My blood sodium at 132 mmol/L and I should only be concerned if it falls to 120 mmol/L. I have been refered to a neuro-ophthalmologists.

 

 

 

Also see: Summary IgG Infusions Log

Concepts for Prednisone treatment for CIDP and IgG adverse reaction side-effects: Prednisone investigated Chronic Inflammatory Demyelinating Polyneuropathy CIDP IgG skin rash IgG sudden scalp hair loss on head IVIG turn bald CIDP Patient transition from IgG immunoglobulin to Prednisone stop IVIG IgG versus prednisone for CIDP hypnagogic hallucination