Beginning IV therapies are initially overwhelming. Support from other patients with experience can be extremely beneficial in relieving some of the fears doctors without firsthand experience cannot. It helps clarify some of the uncertainties during the process.
I am one of the moderators in the Facebook group, IV Therapies For Mast Cell Disease + Related Conditions. The group was once focused primarily on a new intravenous treatment for Mast Cell Diseases known as the Continuous Diphenhydramine Infusion (CDI). It has since been altered to cover a broader spectrum of topics relating to all IV therapies for Mast Cell Disease and any related conditions (i.e. Ehlers Danlos Syndrome, Dysautonomia, Gastroparesis, autoimmune diseases, etc). This post is a collection of resources.
Safe Infusion Supplies/Medications For Mast Cell Disease
- Contaminates Begone: Thank You, B.Braun
- Excipient Recipient: Mast Cell Reactions To Excipients In Supplies + Medications
- Tolerated Central Line Dressings + Antiseptics For The Allergic
- The Secret Weapon To No Heparin
Mast Cell Disease Treatment
Continuous Diphenhydramine Infusion (CDI)
- Diphenhydra-what? The Continuous Benadryl Infusion
- 150,000+ mg of Benadryl: Continuous Diphenhydramine Infusion Update
- All About The Continuous Diphenhydramine Infusion VIDEO
Tyrosine Kinase Inhibitor (TKI) With CDI Therapy
- Continuous diphenhydramine infusion and imatinib for KIT-D816V-negative mast cell activation syndrome: a case report
Continuous Famotidine Infusion (CFI)
As resource posts and videos become available, I will edit to list them here. Please be sure to join the Facebook group, IV Therapies For Mast Cell Disease + Related Conditions for more information!