chazz
Biography
Name | Charles |
Nickname | Chazz |
Last Name | Neilson |
Year of Birth | 1946 |
Gender | Male |
Location | Sugar Land |
Relationship | Patient |
Short Bio | Retired ER physician. Never smoked. Got Covid twice (in 2020) before getting Moderna vaccines #1 and #2 in 2022 followed by Covid again 3 months later. Less than 6 months later (Feb23) I started obvious symptoms of IPF. Very progressive downhill and started mycophenolate and Ofev within 3-4 months. Have slowly inproved and almost back to square one (for a 78 year old man). Ofev caused HORRIBLE frequent diarrhea with malabsorption and over 20 pound weight loss. Read online that carob powder has anti-inflammatory effect on gut epithelium and protects it from inflammation from Ofev and most contraindicated foods. NOW I do not have that horrible uncontrolled diarrhea as long as I take carob powder daily! 1 1/2 tsp mixed with some ensure, 2 scoops ice cream, 1 tsp ovaltine, 6 pieces of ice, and a few frozen strawberries (or 1/2 banana or cherries) and blended TWICE daily. If I miss one dose I get diarrhea! It Works! Carob powder is a cocoa powder substitute used in baking. Hard to find except at Wholefoods. |
Type of Diagnosis | IPF |
Lung transplantation status | ineligible |
Best advice for PF symptom management | See my above bio |
Are you currently taking an anti-fibrotic medication? | yes |
If yes, which anti-fibrotic medication are you on? | Ofev |
How did you find us? | PF News Website |
How long have you or the person that you are caring for had PF? | 1 1/2 years |
Privacy Policy and Terms of Use | I agree |