A while ago, someone asked what the cost of laser therapy was. It varies. I was getting treatments from one chiro who charged me $100 per treatment. Then after a while she raised it up to $150 per treatment—-a big jump. I called around and found another chiro in my area with the correct summus laser who would do the treatments for $55…

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I was on Ofev for 2 years and had to go off it due to severe diarrhea. I’ve been on pirfenidone now for 18 months. Initially, I was fine but as time went on I became severly nauseous every day. I have GERD and pirfenidone seems to make it worse. I’m constantly gassing up , belching, etc. The GERD medicine doesn’t work anymore. I…

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It will be 4 years since my initial diagnosis and I remain stable. I am quite active for my 85 years of age. I walk on the beach, do yoga, paddle around in the pool and exercise daily. I have no cough and feel good every day. I do get laser treatments on my lungs weekly according to the protocol of Dr. Andrew Hall. I also take…

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Hi Judy and marilyn. Be careful about copper. Copper in water pipes in inorganic and cannot be assimilated by the body. it can build up into toxic levels in the body. Only organic copper works. My father died of copper intoxication—too much copper ingested from drinking out of the faucet of copper water lines. The acid water leaches…

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If you’re short of breath during the day, you may need the supplemental oxygen during the day. Do you have an oxymeter and do you check your oxygen level? You should be. What does your pulmonologist say? You should be talking to him.

Your reply was the most informative of any I received. Thank you. I will be sure to let my oxygen provider know what could have been wrong with the portable unit they gave for overnight use. They didn’t seem to know what was wrong or what caused the problem. It is so hard to get any information about oxygen use. There seems to be a big grey area.

My oxygen provider gave me a plug-in portable concentrator for overnight travel. When I tried to use it it started beeping and I couldn’t sleep. There was a message about air purity not being good. What does this mean? Is this a serious problem and how can it be fixed?

Well, your problem was very similar to mine. We need our sleep. I use 2 litres at night so don’t have a problem with dryness in the nose yet. Maybe you need a new concentrator. I’d have it looked at. I have to get my at home unit changed periodically. I’ve contacted the American Lung Association trying to find out if there is a…

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Hi Marilyn:

No, my portable concentrator was not pulse. It was provided by my oxygen provider specfically for overnight use. It was a plug-in unit as well as pulse but I used it overnight as plug-in with continuous flow as I cannot sleep with pulse. It beeped because it malfunctioned. The message was about the air not being pure. They…

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What kind of portable device can my oxygen provider give me for the trip and use overnight? Last time they gave me the Oxlife Independence Concepts 2 Oxy Concentrator. During the night it started beeping continuously with a message that there was a problem with the air purity. I couldn’t get the beeping to stop and wound up shutting it off…

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Thank you everyone who responded about my fear of flying with oxygen. I feel better already. I am concerned that if my oxygen drops below 88 the plane would have to make an emergency landing. When home I use 2 litres; when I exercise I use between 4 and 5 litres. It really drops when I exert myself. They say that the air is much thinner…

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I’m nervous about flying as I’ve never flown before using oxygen. I normally use 2 litres when I’m just sitting. However, I’m told that the air is thinner in the air so how many litres would I need? I use the Inogen G5. How do I know if this is approved for flying by the airlines. I will be flying on Allegiant from Myrtle Beach to…

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Hi Judy: I take NAD with resveratrol plus 12 mg of zinc daily. Don’t know if it helps or not but I’m stable. Was on OFEV for 2 years and had to go off due to severe diarrhea. I’m now on Perfinadone, generic for Esbriet. Why don’t you ask your doctor about trying that. It is much cheaper than Ofev. I pay $400 for a 3-month supply from…

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I go to the gym daily using oxygen when exercising. I exercised daily before my diagnosis so I’m in good physical condition. I’m 85 and female. I find that when walking outside I walk too fast and my h20 really drops even with oxygen. The treadmill allows me to pace my speed. I used to walk at level 3. Now I walk at 1.2. I break the…

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I was diagnosed 3 years ago and am now on perfinadone after being on ofev for 2 years with many side effects. No side effects with perfinadone since starting in August 2024. I never have trouble sleeping—-slleep like a log ev ery night. However, I do have GERD and may look into buying a sleep number bed to help with the post nasal drip. I…

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I assume you’re talking about Pirfenadone. I’ve been on it for 3 months and have had no side effects. I’m beginning to wonder if it is working. I was on Ofev for 2 years and had constant diarrhea and nausea.

I was on Ofev for 2 years. Due to side effects and no longer eligible to get it free I’m starting Pirfenidone. My concern is that if I can’t tolerate it, can I just stop taking it or do I have to wean off slowly. .

I am only 85 and have enjoyed good health until my diagnosis 2 years ago of IPF. I just went off OFEV after 2 years and feel like I got my life back. I’ve had daily diarrhea for all of 2 years and had to wear diapers when going out as there were sometime accidents. I’ve had overwhelming nausea and lost 20 pounds. I was not overweight. …

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My sinuses have been horrible for months now. I only use 2 litres of oxygen and for over a year I had no problems. My PC looked in my sinuses and said they are a mess. Sent to a ENT who also thought they were a mess. Constant post nasal drip into my throat and constant hoarseness. Nothing over the counter works. ENT put me…

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I always loved dusting powder and Johnson’s Baby Powder. After showering, for years, I would dust it on my body, especially on my breasts. There was a lot of powder dust in the air and I probably breathed it in. It was full of asbestos. That is where I think I got my IPF. Has any other female done this over the years; i.e., used…

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It was suggested to me that the asbestos in baby powder could have been the culprit. For years I doused my breasts with the stuff after showering and it created lots of dust which I inhaled. AHA—-asbestos in the lungs.

I get summus class IV laser treatments weekly and have had no progression of this disease in over a year. Dr Andrew Hall is the expert on this. These lasers are used by chiropracters and you have to find one in your area who uses this laser and is wiling to give you treatments.

I WAS ON OFEV 150MG TWICE A DAY FOR 2 YEARS AND MOST OF THE TIME HAD CHRONIC DIARRHEA. IN SEPT 2023 IT GOT SO BAD WITH NAUSEA AND VOMITING THAT I TOOK A BREAK FOR 3 MONTHS. NOW THAT I’M BACK, I HAVEN’T HAD DIARRHEA AT ALL. INITIALLY, I STOPPED DRINKING MILK—-HAVE ALWAYS BEEN A BIG MILK DRINKER. HOWEVER, I CONTINUED TO EAT CHEESE. …

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I’ve been doing them for a year now. My PFT’s have improved. My PF is stable. I get a CAT scan in January and then I will know more.

I have Class IV laser treatments. In some cases, this treatment halts the progress of the disease. It is painless and non-invasive. Look into it. Dr. Andrew Hall has IPF and has found it to be very effective for himself and other patients.

Hi Argen:

I was diagnosed 2 years ago and am an 84 year old female. I have to use oxygen 24/7. I really don’t find it inconvenient at all. I’m on 2 liters. I have 88% of my lungs that are still working. I use the Inogen portable units and manage to go everywhere as I did before being diagnosed. I exercise daily, go to the beach and…

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Hi Ray:

I take Ofev. The price is $10,000-$12,000 per month. Fortunately, I qualify to get it free. Saracatinib costs about $28,000 per year. With RX insurance, the cost may be much lower. From what I’ve read, saracatinib reverses the scarring in the lungs. So, if approved, it could be a game changer for all of us.

It is currently in use to treat certain cancers. The annual price is in the $28,000 range. That is a lot better than Ofev.

The start date of this study was Nov 12, 2020. the final phase is now recruiting participants until Dec 31st. The study is being done at Mount Sinai in New York City. This phase will be completed in June 2024. From that point, it takes 4-6 months to clean the data and prepare the primary manuscript. The results will be available end of…

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The final phase of the saracatinib study is being done at Mount Sinai in New York. They are currently recruiting enrollees through Dec 31, 2023. The patients will be followed starting in Jan 2024 through June 2024. After this it takes from 4-6 months to clean the data and prepare the primary manuscript. The final results will be…

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Sarcatinib is already an approved drug for treating certain cancers. Therefore, once approved, I wouldn’t think that it would take too long to be available for use for IPF.

I believe I found it on their website—-it is made by astra-zenaca.

I went on the PF website to see what I could find out about sarcatinib. It said that the final trial of this drug will be finished in June of 2024. Some of us on this forum thought it was completed in June 2023. So, that is not accurate. We will have to wait almost another year to find out the results. The cost is $28,000 per year.

Sounds too good to be true. If it is eventually approved for IPF, it will probably be too expensive for any of us to afford. Look at the price of the current drugs in use. I take OFEV but qualify to get it free. There is no other way I would be able to afford it.

Hi Judy: Do you think the Ofev caused the chirossis or you would have developed it anyway? I have fatty liver and have been on Ofev over a year now and no problems. I drink no alcohol. I have liver/kidney function blood work done every 3 months.

I’ve said it before and I’ll say it again—-try taking Metamucil. It bulks you up and relieves the nasty diarrhea. I was told to do this by my gastroenterologist and it really works. It is not only for constipation.

I found out by accident. I was hospitalized for another problem and they found out that my oxygen was low. They did a chest x-ray and found the scarring. However, my GP did a chest x-ray 5 years ago for another matter and it showed up then but I was never told about it. These doctors should be held accountable about these things. If I… Read more

When I first started Ofev last year I took 100mg twice a day. Then I moved up to 1 150mg in the am and 1 100mg in the pm. No side effects. However, my pulmonologist told me that the trials were done on the 150mg twice a day. So I moved up and when I did had the diarrhea and upset stomach. I still have diarrhea—-some days are better… Read more

I’m somewhat confused, too. I always swam laps in our indoor pool and PF has put a stop to that. However, I have started going into the pool with a noodle (flotation device) to reduce my exertion. I paddle around for 20 minutes using my arms and feel fine and have no shortness of breath. However, when I come out of the pool and check… Read more

I have been taking 22 mg of chelated zinc daily for about 3 months now and don’t feel any different. I am using oxygen 24/7 but don’t feel like I have anything. My breathing is good and I have boundless energy. I was diagnosed 1 year ago. The website pfwarriors.com has information on the correct dosing that was found in a study at Mt Sinai… Read more

Hi Chris: You are fortunate that it was found early on, if that is what it is. Follow-ups are important to check it’s progress. When I was first diagnosed, 1 year ago, I had to go on oxygen immediately. It showed up on an x-ray I had done 4 years ago for something else and I was never told about it. That makes me very angry. I’m taking… Read more

I did it once in order to discuss privately some issues. How else are you going to get someone else’s e-mail without giving it to them on the forum? I didn’t mean any harm.

I don’t really have breathing problems so I can’ answer that. I use oxygen for exercise and when walking. Even when my oxygen drops, I feel fin eand am not out of breath The cuppng and deep tissue massage were to help break up the scarring along with serrapeptase.

I live in Myrtle Beach, South Carolina, and there is a clinic and doctor here who does stem cell therapy. My neighbor is getting it soon but not for lungs. Another neighbor had it, but not for lungs, and has seen great improvement. She had been confined to a wheelchair and now walks and does many activities. The cost is high—-$20,000.

Hi Karl:
I was interested that you said on your post that the lung scarring was there 10 years ago. I recently looked over some old medical results from 12 years ago and noted that the lung fibrosis was there then. However, it was not brought to my attention. Also, 3 years ago it showed up on a chest x-ray I had for something else. Again,… Read more

Amazon has the red light lasers and they look more like heating pads and are reasonably priced. Hooga, which is highly rated, has panels that are free-standing and though more expensive are still within a price that is affordable. I’ve read that this red light laser therapy increases collagen. (It is also supposed to break up the scar… Read more

Has anyone tried this red light therapy and, if so, has it been successful. I understand that these treatments break down collagen and reduce fibrous tissue. The treatments are done by physical therapists so you need a prescription from your pulmonologist. So everyone, let me hear your thoughts.

I have always been a milk drinker and I find that it doesn’t give me any problems with the Ofev. Another PF patient told me the same thing about milk and dairy products. I tolerate them very well with the Ofev. I also find that Metamucil is very effective in helping with diarrhea. It was unbelievable to me but it really works.

Hi Donald:
What do you mean by immunocompromised? I am on Ofev. Does that make me immunocompromised? Does that make my immune system weaker. Please advise.