[Gina]

Harold, that is great news. I have a very similar situation. Do you eat your cinnamon raisin bread dry or add butter. I could use some relief as well. I’m willing to try anything after my 21/2 years of running to the bathroom. Thanks

[Gina]

Hi John?

I was diagnosed last year and was turned down multiple times for help. I finally found “The Assistance Fund” (tafcares.org) and was accepted after a short time on their waitlist. They pay the balance after insurance. Hope this helps. Good luck

[Gina]

Hi Annette,
HRCT is a high resolution CAT scan. They are diagnostic for IPF. UIP (usual interstitial pneumonitis) as seen on the HRCT confirms IPF. Idiopathic pulmonary fibrosis has no known cause, hence “idiopathic.” Mine is familiar as well. My brother was also diagnosed recently. Radiologists can differentiate between UIP vs NSIP (nonspecific interstitial pneumonitis). NSIP has various other medical causes diagnosed with further testing. UIP is specific for IPF.
Good luck with your PFT. The important number is the DLCO. This will give a good indication of how well your lungs are able to exchange oxygen and carbon dioxide. I think my daily exercise is what is maintaining my DLCO.
Are you planning on starting an anti fibrotic?

Sent from my iPhone
Gina

On Jun 21, 2022, at 7:58 AM, Pulmonary Fibrosis News Forums <<span dir=”ltr”>[email protected]</span>> wrote:

Annette wrote:

Thank you for replying. I will be having my first PFT in August so I am anxious to see how that goes. I have no idea what an HRCT is but I’m glad your health is moving in a positive direction.

Do you know the cause of your condition. I have been racking my brain trying to figure out where this UIP came from. I’ve never been a smoker but I do have seasonal bouts with bronchitis. I also used to live in a place that had high radon count. Not sure about any of that.

Good look with the trial meds. What is it like?

Post Link: <span dir=”ltr”>https://pulmonaryfibrosisnews.com/forums/forums/topic/starting-ofev/#post-32384</span&gt;

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Starting Ofev

[Gina]

hi Annette,

I have been on Ofev 150 since January. I also deal with diarrhea and occasional nausea. The nausea usually passes within 15 minutes. The diarrhea, unfortunately, has gotten worse. I am still experimenting with different foods. I also just started a new clinical trial, so I’m thinking these new pills are a major factor.

My PFT and hrct have improved, so everything is worthwhile in my mind. I’m not sure if this is helpful because of my involvement in clinical trials as a variable in my tolerance or intolerance of the Ofev. Hang in there and stay positive.   Gina

[Gina]

Hi Charlene and Jean,

i was granted funding from

TAFCARES. .Org (the assistance foundation) multiple other foundations said I made too much money. Check them out online.

[Gina]

Hi Pauline,

I’m glad you made it through the difficulties you were having. I was diagnosed with IPF in May, 2021. I have been on Ofev since July with minimal side effects. I am currently transitioning from 100mg to 150mg twice daily. My question to you is what Medicare part D plan is covering the cost? My current plan leaves me a $3000 copay. Fortunately I have a foundation covering the copay for now, but I don’t know how long that will remain. Thank you for your post.