In my non-medical, but experiential opinion, YES. I was diagnosed with IPF/ILD in 2021. I went to a pulmonologist who was part of a practice. While he agreed I had IPF/ILD, he didn’t think it was necessary to go on anti-fibrotic drugs (ofev, esbriet). After 2 yrs and feeling somewhat worse, I went to a pulmonologist at a teaching…

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Regarding the cardiac cath, it doesn’t hurt. I watched mine on the TV the doctor was using. Pretty fascinating. Just have to be super careful with the hole created in your wrist (assuming that is where they start. After the procedure, they will impress upon you the impoertance of taking very good care of your wrist,

Thank you Steve.

Hi All. Would for some forum members to write about acute exacerbation. in IPF patients I saw a discussion from 6 years ago, but am hoping for more experiences. I also know that these exacerbations can be fatal. I hope that any of you having had an acute exacerbation could describe how it occurred and what your treatment was. Thnk you!

Temple Mayo

First, I agree with those who say that each program has their own criteria. But second, your pulmonologist seems ill-informed. If s/he is not with a teaching hospital that has a lung transplant team, I would not take his word on the age issue. On the weight issue, the criterion is usually under a BMI of 30, which you are not right now, but…

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I have been on Ofev about 2 years. I am relatively stable. I was in the transplant protocol for about 14 mos. The protocol basically let’s you know whether you are in good enough shape to go through a transplant. I am, so they released me from the protocol process until such time as my lungs give out. Anyway, to my point. I am so…

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I absolutely second Benzonatate. I had an uncontrollable cough. My first pulmo put me on Augmentin and prednisone along with Tussionex (opioid). It would help, but when I stopped, the cough would come back and we start the carousel all over again. My second pulmo put me on benzonatate and arithromycin. The arithromycin is only takem…

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I am 3 yrs in. My first two years, I treated with a pulmonologist that did not put me on antifibrotic drugs. Instead, he took the “wait and see” approach. The new standard since the advent of Ofev and Esbriet is to put PF patients on one of those drugs unless it is contraindicated because of other issues.

I fired that pulmo and went to my…

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Hi everyone. I would like to weigh in on this conversation with my experience. In 2021, I, like many, was diagnosed with IPF after undergoing an xray in prep for bilateral inguinal hernia surgery. Unfortunately, my PCP sent me to a private practice pulmo. Big mistake.

After an HRCT, pulmo diagnosed me with ILD, which as you know, is the…

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You may have idiopathic PF, which means they don’t know what causes it. There is a large number of PF patients who have had GERD. That’s where I am. In March 2024 I had HH surgery and have has no problem with GERD issues since. Good luck

Hi Charlene and thanks for all you do to keep the many coversations going. My advice, only based on my experience, is to get treated by a pulmonologist at a teaching hospital if possible. Those docs are expected to be up-to-date on the latest treatment. My first pulmo decided it was best to “wait and see”, after my diagnosis, which was…

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Hi. Look at the threads about Ofev, which is the brand name of the same drug.

I am 3 yrs in also and I am not far from needing O2. My pulmo, at UVa Hosp, said that the better choice is continuous flow over pulse. Unless they have updated the devices, Inogen is plus. My SIL uses them for COPD when she is away from home, otherwise she uses a concentrator. I know the tanks are not desirable, but… Good luck.

You might ask your doctor about benzonatate for your cough. It helps me greatly. Good luck.

Hi Terri.  I retired at the end of ’21, so I am on Medicare.  I can’t imagine your insurance company standing by their denial once your doc gives them appropriate paperwork.  You also may be able to taker advantage of the pharmaceutical company’s program for payment.  Only folks who have private insurance can qualify.  Good luck!

Hi Nancy.  Below, I said I had not had any side effects.  But, I was very tired and my BP problem, which was controlled, got worse.  Plus, headache that I attribute to the high BP.  So, my doc said to go off of it for 15 days.  I have been off for one whole day and feel much better.  My concern is that, currently, I am only taking 100 mg… Read more

Thank all for their responses.  So far, no side effects I can attribute to Ofev.  I am getting muscle burning and some cramping on ocassion and some fatigue, but that could be BP meds or the IPF.

 

Hi Scott. I hope you get some good information from a younger person.  I am 68, diagnosed in 2021, on Ofev, but no O2 yet.  I’m in the U.S. so I am not familiar with your NHS.  I don’t know if your consultant is a nurse or a doctor or someone else.  It is great to have an experienced pulmonologist to help to understand what to expect and what… Read more

When did you start getting any side effects from Ofev?  Which side effect and when did it start?  Do the side effects start with the first pill or when?

If your Dov comes up with an alternative, other tha Esbriet, please let us know.  I haven’t started yet, because I am waiting to see if there is help available.  I am aware of the foundations and various other possibilities.

I was scheduled for a bilat hernia operation and had to have a chest xray for pre-op.  Bingo…