Tuesday, April 25, 2017

IV Therapies For Mast Cell Disease + Related Conditions Resource List

Beginning IV therapies are initially overwhelming. Support from other patients with experience can be extremely beneficial in reliving 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.


Central Line:


Basic 




4. Clave Change VIDEO [COMING SOON] 


Home Health




Safe Supplies/Medications for Mast Cell Disease





Heparin



Lifestyle

1. Showering With a Central Line VIDEO [COMING SOON]



Treatments:

  • Mast Cell Disease

Continuous Diphenhydramine Infusion (CDI)

1.  CDI study in The Blood Journal by Dr. Lawrence Afrin

Patient Experience on CDI

1. Diphenhydra-what? The Continuous Benadryl Infusion

2. 150,000+ mg of Benadryl: Continuous Diphenhydramine Infusion Update


CDI + TKI Therapy

1. Why is Gleevec used in Mast Cell Disease?

2. CDI + Gleevec Experience Update: Not My Miracle Cure?

Case Report(s)

3. Continuous diphenhydramine infusion and imatinib for KIT-D816V-negative mast cell activation syndrome: a case report


Continuous Famotidine (Pepcid) Infusion

1. Medication Madness: Continuous Famotidine (Pepcid) Infusion

  • Dysautonomia 



Parenteral Nutrition 


Total Parenteral Nutrition (TPN) 


As more resource posts and videos become available, I will edit to list them here.