[Millie]

Diet is very important as is keeping yourself physically active. I’m on Ofev which is hard on the liver. I no longer drink any alcohol. Abstaining also helps with the digestive problems caused by this medicine. You could see a holistic doctor and see how they can help you with this. Natural remedies are always best but traditional medicine doesn’t go that route. I had PF for years before being diagnosed. It is now well advanced and I feel that I don’t have time to play around with natural remedies. Early intervention is key for the natural stuff to work. Traditional doctors know a lot but there is still a lot they don’t know, especially about PF.

[Millie]

I was diagnosed in December 2021 but still feel very normal. I do believe I had it for 10 years before symptoms appeared. I used to do a lot of bike riding in NJ—-20 miles at a clip. After moving to SC 10 years ago I got a bike and found that I was out of breath after riding a short distance. I thought it was just old age creeping up on me. As i look back, I now know that it was PF undiagnosed. I have to use oxygen 24/7 at a low level but I feel good every day with lots of energy, etc. Apparently, your PF was found at an early stage. It will slowly creep up on you. Enjoy every day now. I still do, oxygen and all.

[Millie]

I know I’m joining in on this discussion late but better late than never. I started Ofev with 100mg in the am and 150mg in the pm. No problem whatsoever. Did this for a month. Then moved up to 150mg twice a day. The first 3 days i had diarrhea and threw up several times. After that I was fine for a month. No side effects whatsoever. Then, last week, I had diarrhea twice. That has now cleared up and I am again having no side effects. I have been gassy and farting a lot also. My pulmonologist tells me that the studies were done on the 150mg twice a day. Don’t know if the lower dose will be as effective or effective at all.

[Millie]

Hi natalie:
I was taking turmeric daily for several years. However, since I started Ofev I have discontinued using it. I’ve been told that Ofev is a blood thinner and so is turmeric. Not good to be taking 2 different blood thinners.

[Millie]

I believe that medicare, if you are on it, only pays for HBOT for diabetic non-healing wounds. I had HBOT, off label, for nerve damage. I paid out of pocket for 2 treatments a day for 4 weeks.

[Millie]

Yes, I also can recharge my inogen portable batteries in the car. In fact, I do it all the time now.

[Millie]

My pulmonologist handled the RX for me. I had to provide him with a copy of my latest Federal tax return and he included that with a RX for OFIV. I was approved to get it free. I was very surprised because my income is quite high, I think. I would ask my pulmonologist to do this if I were you.

[Millie]

I’m on Ofiv but started very slowly so my body could tolerate it. Optimum dose is 150mg twice a day. I started with lower dose of 100mg twice a day and stayed on it for 2 months. No side effects. Then, I took 1 150mg pill in the am and 1 100mg pill in the pm (12 hours apart). Still no side effects. Did this for 2 weeks. Then I moved up to the 150mg twice a day. The first 3 days I had diarhhea and on the third day I threw up twice. After the third day I have been fine—-no side effects. My body seems to be tolerating it very well. Of course, I think diet is a big factor. Eat healthy. I have become very gassy—-that is, farting. And do they stink.

[Millie]

I’ve never had one yet but I do have 2 tanks that provide 10-12 hours of oxygen each. Then I have 3 other smaller portable tanks that each last 3-5 hours. Then I have 2 inogen battery operated portable units, each with 2 batteries. That should give me another 20-25 hours. I think I’m in good shape for a power outage. I’ve also notified my electric provider of my oxygen use.

[Millie]

How is your heart rate? When I get out of breath my heart rates goes way up. This breathing problem puts a lot of stress on your heart. My husband had emphysema and eventually his heart gave out. So be sure to keep an eye on your heart rate. I use an oxometer. Everyone with PF should have one.

[Millie]

Lucky you. I used to swim laps 3 days a week and can no longer do so. I use oxygen 24/7 but only at 2 litres. I can swim some but when I get out of the water and check my levels it is down in the 80’s.

[Millie]

I, too, was recently diagnosed—-in December 2021. It was quite a shock as I am very active, swimming laps 3 times a week exercising in the gym daily, line dancing and many other activities. I am 82. The scarring showed up on an x-ray I had done 3 years ago but I was never told about it. Pulmonologist said I could have had it for many more years as in the beginning it progresses very slowly. The only thing I’ve had to give up so far is swimming. I still do everything else but with oxygen. I went on Ofiv in march and seem to be tolerating it very well. I have no other major health problems. Everyone is different so you may have to take a wait and see attitude. Take one day at a time and live it to the fullest. Then you will have no regrets when you have to take that step back. Good Luck.

[Millie]

Hi Charlene:
I re-read the article from Cedars Sinai and found that it also refers to NAD and sirtuini. This NAD is a coenzyme that is similar to vitamin B3. Perhaps it should be taken as well with the zinc. You can buy both NAD and sirtuini on Amazon. Does anyone have any thoughts about this? I’d like to hear back. Thank you. Millie

[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.

[Millie]

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.

[Millie]

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.

[Millie]

The 3 to 5 year time frame is just a ball park figure. My sister when diagnosed with heart failure was also told she had 3 to 5 years. There are so many variables. If you have other major health problems, not too good. If your health is otherwise excellent, better outlook.

[Millie]

The bottom line with PF is it’s usual slow progression in the early stages. It is quietly scarring your lungs but you are unaware because it hasn’t caused symptoms yet. Even now, when my oxygen drops into the 80’s, I am symptom-free. Just like cancer, by the time you have symptoms, it is already well-advanced.

[Millie]

Hi Nina:
Don’t be afraid of using oxygen when the time comes. I am on a low dose and have a concentrator in my house with 50 feet of tubing that enables me to get all over my house and front porch and back patio. I am very comfortable. I’m out every day and use the Inogen portable which is lightweight and rechargeable with batteries. Nothing much has changed in my life since being diagnosed. Some of my neighbors and friends who, when they heard I was on oxygen, thought I was on my deathbed. Not the case. Keep a positive attitude and stay active. If you can do that, I assure you that you’ll be here for a very long time.

[Millie]

Hi John:
I wouldn’t expect improvement with the zinc formula very quickly. The scarring may have been going on for years. It’s a slow process and improvement will also be a slow process is what I believe. Just have patience and hope for the best. The NAD and sirtuini are available on Amazon. Continue to hang in there. We can’t give up the fight.

[Millie]

Hi J.L. Labrack: My resting oxygen is 93 to 97 but when I walk it drops down into the upper 80’s so I have to be on oxygen 24/7. I don’t really find it to be a problem. I’m out every day and even go to the beach and the pool. I have Inogen portable units. The small one only weighs 3 pounds and I wear it like a shoulder bag. I go to the gym and exercise with oxygen and don’t find it to be a problem. Of course, I did all these things and more before being diagnosed in December 2021. I’m 82. I’ve been on Ofev since April. I get it for free as my doctor sent in my tax return for me. I must admit, I’m not exactly low income. I’ve been tolerating it very well. Everyone is different and if you don’t even try, you won’t know how it will affect you.

[Millie]

Hi Yvonne:
I hope you are on a good, healthy diet. That can make a difference. I totally abstain from alcohol. Drinking wine breaks me down and caused diarhhea so I don’t imbibe anymore. Why ask for trouble. Limit sugar intake as well as fats and fried foods. I also take daily probiotics and eat yogurt. Try Metamucil. My doctor recommended it for diarrhea and it really works. It bulks you up. Tolerating this Ofev is really a game of trial and error. I always have a diaper with me if I have to go out for a long time. And, I’ve had to use it. Yes, every day is an adventure on this journey—-not always the kind of adventure you want.

[Millie]

Is the 100mg of ofev effective at slowing down the scarring?  My doctor tells me that the trials were done on the 150mg twice a day.

[Millie]

My doctor didn’t answer me when I asked if the 100mg twice a day would be effective.  He said the trials were done on the 150mg twice a day.  Glad to hear that someone on 100mg is finding it effective.  That was a big question mark in my head.