Temple Mayo
Forum Replies Created
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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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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.