I tried the Carob powder for a couple of days and believe it started to help. Unfortunately, I also got a noise bleed on the third day which is not typical for me. I looked up Carob powder interaction with blood thinners and sure enough there is one. I’m glad it works for you!!

Thank you so much for this info!

Thank your for the suggestion. How much carob powder do you use?

I do.

That’s what I’m doing as well and having the same experience you are. Thanks for your response.

He said either way was fine.

Thank you.

I was recently prescribed Jascayd and have been on Ofev for two years. I’m trying to decide if I should take both drugs at the same time or stagger. For those that have been on both, what are your thoughts and experience? I don’t tolerate Ofev very well but am willing to deal with the side effects.

Thank you for sharing your experience! Very encouraging. Also for being in a trial. I was in a trial but it got stopped for safety reasons 😞

The amount of time it’s taking the FDA to approve this drug is very frustrating. My doc is ready to put me on it as soon as it hits the market. I also plan to stay on Ofev too.

Thank you for the additional information. I’m so sorry to hear this news and that it doesn’t appear to be helping you.

Briano – did you stay on OFEV during the trial and after. I’m asking if you did both?

I’m also very interested in this new drug. It’s my understanding that compassionate (extended) use is only for people that participated in their trial. Does anyone know if that’s true? I was doing the Beacon trial that was cancelled for safety reasons. It was my first experience in a trial

I in the early stages of this disease and not on oxygen. I find when snow is approaching my breathing is more labored. Guessing it is due to heavier air. Makes me very anxious and makes me think about the disease more than usual. I try to do things to keep my mind off of it but it’s hard.

I too am in the Pliant trial. I also take Ofev. I was diagnosed in Oct 2023. I just had my 6 mo trial check up and there was NO change in pulmonary function tests or CT scan. This trial is still ongoing. My side effects are the same as with Ofev. At this point I’m very encouraged!

The drug company for one of the drugs mentioned in the podcast recently announced they will start the phase 3 trial as soon as they have their max participants enrolled in phase 2b in their attempt to help speed things up. Don’t give up hope. There’s also a possibility of compassionate use for drugs that haven’t gotten to market. Keeping the faith!!

Thanks for this info. I’m newly diagnosed and just started Ofev. I also purchased the zinc plus other 2 OTC supplements. Does anyone know if you are suppose to split the daily dose of the NAD + and other supplement into two different times of day or take it all at once?

I’m interested in the same topic. I too am on Xarelto for the same reason and the pharmacist told me I should be OK on both but to watch for nose bleeds, bruising, etc. I start Ofev on Monday.