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

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