Idiopathic Pulmonary Fibrosis: Any clinical trial recommendations?

Posted by dharay @dharay, May 4 4:38pm

I am taking OFEV 150mg twice daily for my IPF.
1. Any vitamin recommendations
2. Clinical trials

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I researched this for two friends with IPF. Vitamin D, CoQ10, Turmeric are
found to have some activity. I would also consider an anti inflammatory diet.
Inflammation may contribute to fibrosis.

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I was diagnosed with Interstitial lung disease which is most likely the same as what you have, I suspect I had it a while before I showed any symptoms. I was given prednisolone 50mg to treat it which had a negative effect on my mood. This was dropped to 25mg. My disease progressed and I was referred to a hospital lung clinic and given mycophenolate in addition to my prednisolone. My condition worsened and I was hospitalised due to hypoxia and spent five weeks intubated in Intensive care. I was moved to a respiratory ward where I was affected by Pseudemonas Aurigenosia, this is a common opportunistic infection that resides in most hospitals. My condition was at the stage of normal oxygen nasal probes were insufficient. I was placed on high flow oxygen therapy. I was assessed for a lung transplant and was successful. I received a lung transplant and am here writing this five years in. You need to accept the fact you need a respiratory specialist and be placed on a lung transplant waiting list, it is a lot to get your head around I know. You do not want to leave it in hope you will get by, you have to be assertive and push for appropriate treatment. I have mental scars from not accepting the severity of my disease and going through what I have. With all my heart and soul, I hope you get well and live a long and happy life.

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