As of March 27, 2020 I, a CIDP Patient, do not have any reason to believe that I have now or have had covid-19 and like most I clearly want to avoid getting it. CIDP Chronic Inflammatory Demyelinating Polyneuropathy is considered an autoimmune (or immune system mediated) disorder so presumably a CIDP patient potentially has a compromised immune system susceptible to covid-19 coronavirus infection (a respiratory syndrome). I decided to add this COVID-19 webpage to CIDPlog about how I am coping with the added burden of Covid-19 coronavirus on CIDP. I believe I may be at elevated risk due to my CIDP-induced breathing respiratory problems as well as my ongoing chronic CIDP condition.
» Covid-19 infection through CIDP Cuvitru-caused skin lacerations - I have large lacerations, red blotches, skin irritation and open spots on my skin as a side-effect of IgG infusions. My neck is covered with these lacerations and I have some on my face too. I know that the COVID-19 Coronavirus has to get into the respiratory tract and lungs to be dangerous but I am nevertheless quite worried that covid-19 virus could enter my body through these lacerations by airborne or direct hand contact.
» Covid-19 Virus contamination of IgG immunoglobulin - IgG is a blood plasma product used in my Sub-Q SCIG IgG subcutaneous weekly infusions. With the covid-19 coronavirus pandemic I am worried about two possible scenarios: One, there is a shortage of IgG as blood donors dry up and two the IgG IVIG liquid itself could become infected by covid-19 virus despite 'assurances' by the Plasma Protein Therapeutics Association (PPTA).
» CUVITRU IgG Supply difficulties - March 24, 2020 I was supplied with "all they have in stock" in CUVITRU IgG at the Toronto General Hospital : just two months of my CIDP subcutaneous sub-q self infusion requirement. I usually get three months supply at a time. Thus I am going to have to return at what is likely to be a heightened covid-19 situation at the hospital in just two months and who knows if they will even have it then?
» SCIG Supplies - Fortunately I so self-infusing SCIG or Subq. But I have limited supplies of needles, syringes, regulators, and especially disinfecting items. I am hoping that these will be replenished by the time I need them in a few weeks.
» My Doctor Appointments - Due to Covid-19 fears I have not done some blood tests that I usually have every six months. Also my two doctor doctor appointments for next week have have been changed to phone consultations.
» My Covid-19 Protection - I have been in 14-days of self isolation since I arrived in Toronto March 17, 2020 but I had to break this to pick-up my Cuvitru IgG drugs. For the pick-up I wore a N91 masks (stored for my breathing problems) and completely covered the rest of my body. I walked to the pick-up point and back and on return discarded the carry-pack and laundered ALL my clothes.
» My continuation of Self-Isolation - I intend to continue my self-isolation for as long as the danger persists as I believe my risk of contraction is high and if I am infected my life will be at extreme risk!
I am troubled to think of other CIDP patients many of which do not have the mobility I am still lucky enough to have. Also, those on IVIG requiring a hospital visit could be at much greater risk of contracting covid-19 than those on SGIG / Sub-q subcutaneous self-administered infusions at home. The CIDP clinic at my hospital is minimally staffed so support for CIDP patients is much reduced. A worrisome collateral damage to the health system of the COVID-19 Coronavirus Pandemic.
Convalescent Plasma IgG immunoglobulin Drug Trials for use in treating against Covid-19. I am wondering whether CIDP patients on IgG immunoglobulin (like myself) actually have a higher than average protection against covid-19 due to the infusions. (IgG provides the majority of antibody-based immunity against invading pathogens). I found IVIG helped with my respiratory problem and interestingly starting late March 2020 some trials are indicating high-dose IVIG is an effective treatment for late-stage Covid-19 patients! Mid-April 2020 Octapharma (who make Panzyga IVIG and Cutaquig SCIG bands) are starting trials as I write. Is there some extraneous effect at work that IVIG helps with breathing generally? August 23, 2020 FDA, in a few days about-face (sounds like pushed by the US President Donald Trump), provided "emergency use" approval of convalescent plasma for Covid-19 patients. While disturbed by Trump's behavior and incompetence, I am hopeful that the surge in interest in IgG immunoglobulin could also have benefits for CIDP patients (not least because of the boost to R&D spending in the space). It is interesting that Covid-19 patients can be treated with plasma plus dexamethasone - the very combination that I experienced in my trial of the approach for my CIDP.
Note that the US GBS/CIDP Foundation stated March 6, 2020 that "CIDP and variants will not put patients at any higher risk of contracting the COVID-19, but those who are treated with chronic immunosuppressive drugs (steroids, Rituxan, Cytoxan, Immuran, etc.) may have compromised immune systems with risk of increased susceptibility to (any) infection".
If you have CIDP and have information of interests to others with CIDP or are infected by covid-19 Coronavirus, I would like to hear from you. Please write me at Editor, CIDPlog.com email: firstname.lastname@example.org
CONCEPTS for My CIDP Log COVID-19 coronavirus CIDPlog.com IVIG COVID-19 SubQ COVID-19 immunoglobulin COVID-19 CIDP infusions COVID-19 coronavirus Chronic Inflammatory Demyelinating Polyneuropathy, Demyelinating Neuropathies, neurogical chronic disease Plasma Protein Therapeutics Association (PPTA) COVID-19 Coronavirus Pandemic Respiratory Syndrome. How I am dealing with Covid-19 and my CIDP,
Updated April 02, 2020