My mom survived 10 years. It will be 6 years for me in December.

I have bronchiectasis which causes mucus to build up. The only thing that works for me is mucinex or any OTC mucus relief. I stopped gabapentin due to all the adverse side effects I am now finding out about. It didn’t help with anything anyway

I have been on hold with them for as long as 45 minutes. I just put my phone speaker on and do other things as I wait. I have two numbers for them 1(800)556-8317 and 1(866)297-5906. Keep trying I got better results when I called late afternoon. Best of luck to you!!

I have had the Covid vaccine in 2021. I’ve had the flu vaccine every year. I am on ofev now for four years. Got Covid last year. It wasn’t too bad. With that being said I am reluctant to get more vaccines of any kind. Personally I wish I hadn’t let my Dr talk me into the Covid vaccine. I just think it was too new. Also as a nurse I took care…

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I spoke with them but it was too expensive for me. I’ve been taking Haritaki that I get on Amazon. It’s a natural substance and is considered the king of medicine in India. I have seen some improvement with my shortness of breath and my overall feeling. My last lung function test had improved.

I have been on ofev now for four years. There are assistant programs for the cost. Ask your specialty pharmacy for referrals. Also BI Cares (an assistant program from the manufacturer of ofev) has assistance. If you qualify your ofev could be free. Mine has been free for two years now. You have to apply every year for any program.

As far as…

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I am not a Dr and do not claim this will work. I did some research and am taking Haritaki ( buy it on Amazon) some studies say it reversed PF in mice. I have taken it for about a year and my symptoms have improved dramatically. Of course always talk to your Dr before taking anything!!!!

PLEASE read the reviews! They have a low rating with the BBB. I am on Ofev and get assistance with a program. Talk to your Dr about programs that assist in the cost. I ended up with no out of pocket cost with mine.

Just be careful and decide what’s right for you

Call the pharmacist at the specialty pharmacy you get your PF medicine from. They can tell you. I have consulted with them several times and they are very helpful. Even researched a supplement I take and called me with their findings.

You may have what’s called Bronchiectasis. It is non life threatening. Very annoying though. I was diagnosed with that during one of my CT scans for my PF. I take mucinex daily and it works for me.

I take zinc bc of a study I read a while back. I can’t find the study but I’ll keep looking. I will try whatever will not do harm. I also talked with the specialty pharmacist about the ofev. I was told the reason for dosing every 12 hours is to maintain a certain level of it in your system for it to work effectively. I take mine at 9am and…

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I’m taking zinc vitamin D & A, and haritaki
I have been stable for a year and noticed less cough and SOB since I’ve started taking these along with Ofev.

My mom, her sister, and a cousin had it. When I had developed a chronic dry cough I made an appointment with the pulmonologist and her recommended a CT Scan. It showed moderate pulmonary fibrosis. That was in 2019

I was taking 150 mg twice a day. Morning and night. I have lowered to 100mg twice a day per Dr orders. This helps cut down on side effects for me

I’m sorry you are going through so much. I would recommend finding another pulmonologist. At least a second opinion since you feel you are getting worse.

amazing! What medication and or supplements do you take?

That’s amazing! What medication and or supplements do you take?

You’re welcome. Praying for you! I pray you get good results!

I started taking two in the morning and it seems to be helping with my symptoms and my last ct scan looked better. I will keep taking two and see what my next ct  scan shows. I feel so much better since starting it. I see my Dr in a few wee to go over my lung function test I feel like I did significantly better than the previous LF test. I… Read more

I buy haritaki from Amazon the brand is Cona Nature. I take two capsules every morning. I was diagnosed with PF December of 2019. I am 65 yrs old. My mom, her sister, and a cousin of mine all passed away from PF. I take ofev, zinc, Vit D, and Vit A.

Gavin

i am NOT a Dr and only offer this to you from my own experience. Please research Haritaki capsules. I get the Cona Nature brand from Amazon. Haritaki comes from the flower of a tree in India. There it is known as the king of medicine. I take ofev 100mg twice daily and I take two haritaki capsules each morning. I can’t find the article… Read more

It’s called Cona Nature on Amazon
I take two capsules The label says take three. I started with two a day and seems to be working well for me.

 

Hi Dee

i am sorry for your diagnosis. My mom survived 10 years from dx and passed away at the age of 84. I am 65 and I was dx three years ago. The University of Alabama did a study on mice. They gave them chubolic acid and it reversed the scarring. I have taken the powder form called Haritaki. I get it on Amazon. My CT’s have noted… Read more

My mother lived 10 years post diagnosis. I don’t think that is what actually caused her demise. She was 84 years old. Don’t ever give up and try to stay positive. That’s half the battle. As for myself I am in my third year since diagnosis. It will be four years in December. I feel great and tell myself I AM going to beat this!!! I wish you the best!!!!

Look up University of Alabama study on mice using Chubolic Acid in the form of powder Called Haritaki. It is called the King of Medicine. I am on ofev and taking haritaki and my last scan in March went from moderate to mild fibrosis. Haritaki has reversed the fibrosis in mice. I get it on Amazon ( brand is cona nature 2250 mg) I take three a… Read more

My Dr. orders a CT Scan every year along with pulmonary function test. Also labs to make sure the medication is not affecting my liver.

I have PF and got the maderna vaccine
I tested positive for Covid several months later. I only took the test bc I was going to see my grand baby. I only had a runny nose for about 4 days I felt fine other than annoyed from the runny nose.

My mom survived 10 years from diagnosis! Never give up! I am three years post diagnosis and am going to beat this!!!! I truly believe a positive attitude plays a huge roll in our health. Prayers for you and all that have PF themselves or someone close to them!

Hello Sir
I appreciate your response concerning haritaki. I wish more Drs. would consider natural substances to use along with traditional western medicine. I presented my pulmonologist with the research article from the University of Alabama treating mice with haritaki. The results were that it reversed the scarring. Unfortunately he wasn’t… Read more

Pam
He really didn’t have much to say. The medication does not reverse scarring. I am taking an herb from India that I believe has improved the scarring. Being a Dr based on science, I don’t believe he really advocates natural remedies. I take haritaki which the University of Alabama studied the use of it in mice and it showed it reversed… Read more

Talk to the speciality pharmacist and they should be able to answer your questions. Then I would talk to your dr that is over seeing your bp. They may be able to adjust meds for bp

Thank you!!I felt a difference within a few months. My cough subsided quite a bit and I didn’t get very short of breath anymore. I only use my rescue inhaler once in a blue moon. Don’t know if the haritaki or prayers are being answered. I personally think the prayers lead me to the haritaki. I think it’s both! I pray you get the same… Read more

Thank you!!I felt a difference within a few months. My cough subsided quite a bit and I didn’t get very short of breath anymore. I only use my rescue inhaler once in a blue moon. Don’t know if the haritaki or prayers are being answered. I personally think the prayers lead me to the haritaki. I think it’s both! I pray you get the same… Read more

My CT showed minimal shadowing. Last year it showed moderate shadowing!!

I agree with you! I’ll be praying for good results from your test. I figured it won’t hurt to try what may help. I’m also taking zinc, vitamin D, and others.

One article is titled “MDM4 Protein May Help to Treat PF by Clearing Cells That Drive Fibrosis” on

MDM4 Protein May Help to Treat PF by Clearing Cells That Drive Fibrosis

This article refers to chubolic acid which in powder form is called haritaki. It comes from a tree in India and is called the… Read more

My mother actually survived 10 years from diagnosis. She passed away at 84 years of age. I was diagnosed 3 years ago. So far I’ve only had a slight worsening. I began taking haritaki that I get on Amazon. The University of Alabama did a study on mice and Haritaki reversed the scaring from PF. I started taking it one year ago. My symptoms… Read more

I get a grant for ofev and my Medicare picked up $3000.00 but now Medicare is not going to pay. Check with the specialty pharmacy billing and they can give you info on applying for help.

I have been taking Haritaki for over a year. Study at UAB showed it reversed the scarring in mice. It comes from a tree in India and in India it is known as the miracle drug I will have CT next month to see the effects but I can tell you I feel so much better since I started talking it

No oxygen rarely use rescue inhaler and very very little cough now

I have been taking Haritaki for over a year. Study at UAB showed it reversed the scarring in mice. It comes from a tree in India and in India it is known as the miracle drug I will have CT next month to see the effects but I can tell you I feel so much better since I started talking it

No oxygen rarely use rescue inhaler and very very little cough now

Julia

I take Haritaki I get on Amazon

University of Alabama did a study with mice and the Haritaki reversed the scar tissue I have been on it for a year and a half and feel a lot better. No oxygen rarely use rescue inhaler and my cough has diminished significantly. I have a CT in February and I will see if it has made a difference with the scarring

I would like the link to the healing scar tissue zoom recording

Yes! My mom survived 10 years post diagnosis! She had a very positive attitude. I am 3 years post diagnosis and I try to keep her positive attitude. As a retired nurse I can truly say being positive is a key factor in longevity. I’ve seen patients with same diagnosis. One very positive attitude and the other had a very negative attitude.… Read more

I was told by my Dr I could take Imodium as directed when I needed. I did that when I traveled out of state for two weeks. It was a life saver.  Also was told by the Ofev pharmacist the same. Just need to be careful and watch for constipation.

<p style=”text-align: left;”>In memory of my mother Juanita Millender, my aunt, Wanda Cooper, and my cousin, Linda Millender.
My mother actually survived 10 years post diagnosis. My aunt and cousin only 3 and 4 years.
All three passed away peacefully with the aid of hospice care. ❤️❤️❤️</p>

JL I will try to find the link I actually first saw the article on the PF Foundation website I get haritaki from Amazon I get the CoNA Nature brand 2250 mg per serving in the 120 count capsules

I am three yrs post IPF diagnosis. I take ofev, vitamins D,E,A,C. I started taking Zinc and Selinium. I read a study from The University of Alabama using Chabolic Acid made into Haritaki from a tree in India. ( India says haritaki is a natural miracle drug) The study was done on mice that were given ?? to cause PF. The study concluded that the… Read more