I’m very confused. I’m under the care of a palliative care nurse practitioner, but she referred me to a company for a nurse, TP, and a home aide. Now I discovered that the company has been treating my case as skilled, not palliative, which will last for 6-week periods if approved. I don’t know what to do.

I’m also very disheartened. I had a…

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I’ve been on Jascayd for 9 mos previously on Esbriet. Esbriet was causing extreme belly cramping and diarrhea. Now Jascayd is causing same but not as severe. Also headaches and low back pain. I sure wish someone could twitch their nose and coup with a cure or better treatment.

I asked my Pulmonologist about taking the zinc and Nad+. He said it’s best to hold off on taking them. I am on OFEV and he said it is not known how zinc + Nad+ would interact.

Perifenadone (generic Esbriet) has been a good drug for me for the past 3 years. It is covered by my insurance and have had some early problems with sun sensitivity, a bad sunburn with rash that took a month to heal. I have had few problems since. I do not have to take precautions against sun exposure unless I am spending hours outside…

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I was on OFEV for a few months and my side effect was stomach issues, constantly throwing up, I tried the reduced pills, some result. I’ve been stable without any drugs but I’m waiting for the new drug to be approved in Canada.

Hi @Raj1969 how is your mother doing now?

My father is in the same boat, is very frail with the disease progressing quickly and am evaluating Dr. Noble’s treatment – wondering if you/anyone here has seen the condition of the patient getting better with the regimen.

I was on OFEV 100 for 18 moths and suffered with diarrhea which only became worse and worse. My doctor told me to take it once every other day. No improvement. I was so tired of it I told her I’m done taking it. Fortunately Jayscad had just been approved and she prescribed it. I’ve been on it for approximately 5 months and the only side effect…

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I was taking OFEV with protein which controlled the nausea and diarrhea, but the elevated liver levels makes OFEV a no no for me. I eat a healthy diet, take no supplements and sleep well most nights. My disease is considered sub-clinical in that my pft tests are within the normal range and it three years with OFEV the pfts have been stable…

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Hi Kitt, Sorry to be heard about your suffering, wish you feel better. I diagnosed IPF last December 2025, I have not taken any medicine for IPF, yet I am diabetic 2 and high blood pressure somewhat in control with medicine, I am not yet on oxygen no any coughing , feel shortness of breath some time but all time in walking, manage to walk…

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I’m glad @David-Bennett could contribute so much to this conversation about pain management. If you find that any form of opiates is prescribed for you outside of a medical setting, ask them to also prescribe naloxone. Naloxone is critical in an opiate overdose. Before you leave the pharmacy window, ask the pharmacist to explain how to use it.

Sam…

Opiates all have similar side effects that are usually dose dependent. The more potent generally have more respiratory depression. The particular opiate chosen depends on an in-depth discussion with your surgeon. There are several non opiate medications that reduce the need for opiates, but don’t eliminate them. I alternated Lyrica with…

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David are there suggestions for opiate pain control when neck surgery is recommended.?

I have been in Ofev 100mg twice daily for almost three years dealing with diarrhea issues and a nauseous feelings most days but managed the best I could. My pulmonologist added Jascayd in October and I find I do better taking them separate but timing can be difficult. I have continued to have issues with diarrhea, and I find myself with…

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I have been on OFEV since April 2025 with minimal side effects. Once JASCAYD was approved to be prescribed, my pulmonologist suggested that I add it to my OFEV routine which I did. They both work similar to one another but also complement each as well so it was an easy option. I started taking the JASCAYD in May 2026 and within 2 weeks I…

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Severe adverse side effects like vasculitis are rare with Jascayd (1%). Unfortunately, I developed vasculitis & it resulted in serious ANCA associated renal damage. Make sure you are monitored by urine or blood tests, especially if you elderly.

Since my diagnosis in January 2017, I have been involved in every conversation my care team has about my care.

As the patient, I always felt my voice was important in the decision process. Ultimately, decisions were my responsibility. I am the CEO of my care team.

What is your role on your care team?

I notice that as I continue, the point at which my body starts messaging me comes sooner. On the days when I push too hard, I will take longer to recover. If only I had listened to my body!

PS…no other side effects/ problems currently.

I am 79 and a very fit, active senior. I was officially diagnosed with IPF in 2022, but misdiagnosed with COPD In 2019. I took Ofev for 3 years and was “stable” during this period, but the side effects were very challenging and greatly disrupted my ADLs, including 20lb weight loss and diminished appetite, even after halfing the dose. I…

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I absolutely listen to my body now; if I don’t hit ‘pause’ when necessary, my body will hit it for me and it means business when it does!

Back before IPF I was driven; I believe many of us were whether we realized it or not. A culture existed that you worked whether you were feeling “off” or not, either because it was expected or you’d feel…

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