Temple Mayo
Forum Replies Created
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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 may be able to with diet. Good luck.
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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 incensed with pharma that I find it obscene that we have to pay such a high price for our medicines. I asked the transplant doctor how I would know whether ofev is helping me. He said I wouldn’t know whether it is helping or not. Hmmm, charging thousands of dollars a month for a drug that might or might not work… Good work if you can get it. My point is that the only way to know whether it is helping is by going off of it for a significant time (i.e.: between PFTs) to see what changes if anything. I am “lucky” because ofev doesn’t bother me. if it did, I doubt I could justify taking it. Good luck to all.
Temple Mayo
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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 city’s teaching hospital and began treating with a new pulmo who put me on Ofev immediately.
You need a HRCT to see the progression of your disease. Honestly, I have no idea how emphysema affects the treatment of PF, but I would run, not walk, to a teaching hospital if you have one near you. Alternatively, see anither pulmo if you can.
Temple Mayo
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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 larger category of lung diseases that include IPF. For two years, pulmo treated me using a “wait and see” approach, which meant he did not prescribe antifibrotics. My PFT scores were decent except for diffusion, which continued to decrease over the two years I treated with pulmo. For an ancillary reason, I decided to go to the teaching hospital we have in my city. My new pulmo put me directly on Ofev. The question becomes, what did the loss of two years on antifibrotic therapy cost? I’ll never know. But, I tell you that story to suggest to everyone to get treatment frrom a pulmo at a treating hospital, if possible. Alternatively, treat only with pulmos who are part of a transplant program. I have completed transplant eval at another teaching hospital in my state. While I may never get a transplant due to age or other affliction, I am happy that I am a transplant candidate if that option becomes necessary.
During my transplant eval, I was diagnosed with GERD -which I knew- and a hiatal hernia. The transplant team suggested that I undergo surgical repair, which I did in March. There is no necessary correlation between GERD and IPF, but a significant contingent of IPF patients have GERD. It is thought that stomach acid is regurgitated during sleep and some of the acid trickles down the trachea into the lungs causing scarring. So, if you have a hiatal hernia, you may want to have it repaired if medically advisable.
Finally, someone asked recently about post-nasal drip and what to do about it. Like many of us, I have had PND for as long as I can remember. What my ENT has suggested is to use Nasacort and Astepro once a day. According to him, these two drugs can be used daily. In any event, it has help my PND greatly,
God bless all of you.
Temple
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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
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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 the standard in years past. Not anymore. I missed two years od anti-fibrotic medication to “wait and see.”
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Hi. Look at the threads about Ofev, which is the brand name of the same drug.
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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.
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You might ask your doctor about benzonatate for your cough. It helps me greatly. Good luck.
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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 the future holds. I assume that you have checked for support groups locally and/or other sites like this.
I think it is very important to speak with a psychologist or psychiatrist who deal with patients with serious diseases. Additionally, have you looked into lung transplant? I think this would be a real possibility given your age. I have a friend, younger than me, who just celebrated a year post transplant. He is doing well. Just thoughts. Good luck to you and yes, this disease sucks, but please talk to a professional.
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I was scheduled for a bilat hernia operation and had to have a chest xray for pre-op. Bingo…
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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 Monday, Wednesday, and Friday. No issues since.
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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!
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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 once a day. The purpose was to see how my system reacted. If I am to increase the dosage to twice a day and maybe go to 150 mg, I’m not sure how I will control BP and the exhaustion. All part of the rich experience I guess.
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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.
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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.