Medication Options for Rare Diseases: SubQ

Low-dose subcutaneous immunoglobulin is an effective treatment for autoimmune bullous skin disorders: A case report

The above is the new treatment I am using for my rare disease, Pemphigus Vulgaris. I also found out I have CVID, (Common Variable Immune Deficiency, which is part of PI. I don’t understand why my doctor said she couldn’t find research as here are four case studies that specifically discuss blistering diseases and Hizentra and remission.

A little background about me: I was diagnosed with Pemphigus Vulgaris in June 2018 after a year of blistering. I was on Prednisone for 14 months, the highest dose was 100mg a day. It took me a year to taper off the Prednisone. I have had two rounds of Rituxan, following the RA protocol and two maintenance doses. I tried IVIG and got aseptic meningitis. I started using LDN in June 2019 and stopped in December 2020, as I was approved for subcutaneous immunoglobin. I see an acupuncturist and functional physician weekly since December 2018.

Seriously, I should look into being a patient advocate or something because this treatment doesn’t suppress the immune system and allows the patient to control when and where they infuse their medicine.

Since being diagnosed in June 2018, all I feel I have done is research in trying to solve my disease or figure out a way to live a normal life without harsh medications. The medications got it under control and I am thankful for that but the side effects have left me with other issues…