[Millie]

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.

[Millie]

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. NOW, WITHOUT ANY CHEESE IN MY DIET, I’M DIARRHEA FREE. I ALSO DISCONTINUED USING HALF N HALF IN MY COFFEE/TEA. THINK ABOUT WHAT YOU’RE EATING BEFORE YOU PUT IT IN YOUR MOUTH. IT IS WONDERFUL TO BE FREE OF THE SIDE-EFFECTS. I RESTARTED IN LATE DECEMBER SO IT’S BEEN 3 MONTHS OF FEELING GOOD. OFEV NEVER MADE ME TIRED. I HAVE A LOT OF ENERGY FOR MY 84 YEARS. I DO EXERCISE EVERY DAY AND THAT IS A BIG HELP.

[Millie]

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.

[Millie]

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 take long walks and have even ventured into the water on a calm day. You just have to accept it as a new way of life. Keep a positive attitude. Remember, there is always someone else who is worse off than you. Hang in there.

[Millie]

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.

[Millie]

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.

[Millie]

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.

[Millie]

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 had known then, I know I wouldn’t be on oxygen now.

[Millie]

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 than others. I take immodium for it and it helps.

[Millie]

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 my oxygen, it says 80. I don’t believe the accuracy of the oximeter. I do have to use oxygen 24/7 since diagnoses last year but only 2 litres. Pulmonologist tells me I have 80% lung function. Can someone explain this to me. Thank you.

[Millie]

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 in California. They recommend daily 1200 mg of NAD+, 1 gram or 1000 mg of resvertol and 30 to 50 mg of zinc. Has anyone tried this yet? Check the website for additional info.

[Millie]

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 Ofev and also trying laser therapy according to the protocol of Dr. Hall, who himself has IPF. It is supposed to halt the progress of the disease. I’m having a baseline CAT scan done next month and then, 6 months later, another one. This will tell me if there has been any progression while using the laser and if it is working for me. Your doctors are on top if it and that is important as is early diagnosis. You may be able to stay ahead of the game. Good Luck. Millie

[Millie]

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.

[Millie]

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.

[Millie]

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.

[Millie]

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.

[Millie]

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.

[Millie]

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 available around the end of 2024 or January 2025. The study started in November 2020. I contacted the gal who is heading up the study there and this is the info she gave me.

[Millie]

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.

[Millie]

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

[Millie]

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.

[Millie]

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.

[Millie]

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, I was not told about it. It blows my mind that these doctors don’t tell you all of the findings on tests which are sometimes done for other reasons. They tend to wait until it develops into something and then proceed to treat you for it. Had I been made aware of this years earlier, there are many natural things I would have done to see if they could work in some way. Now, I’m pretty far along and time is of the essence. I’m on ofev since April, having been formally diagnosed in December 2021. Yes, having side effects of nausea, diarrhea and stomach pain but hanging in there. I am 82 and have no other medical problems. Have to use oxygen when exercising, walking and sleeping. No shortness of breath or cough. Lots of energy. It makes me very angry that I was not made aware of this years earlier. Has this happened to anyone else?

[Millie]

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 tissue.) That is not something I want to do as the problem with PF is too much collagen being produced by the body and forming the scar tissue in the lungs. Cam someone out there with expertise in this area straighten me out on this important fact.