Kim Morrison
Forum Replies Created
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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 of patients with RSV and never contracted it. I already put enough meds in my system and don’t want to add more. I’ll take my chances being cautious
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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.
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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 your Dr, I am a retired nurse and always recommend a second opinion. If you are not comfortable with how your Dr or the office is doing things, you may want to consider another Dr
BI Cares (855) 297-5906
Hope this helps and you can get help!!
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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!!!!
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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
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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.
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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.
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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 9pm with a snack. They also told me I can take Imodium as needed as directed. I try to balance my intestinal issues with foods. I have been on ofev for four years and I have noticed the longer I’m on it the less intestinal issues I have. I wish you all the best!
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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
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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
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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.
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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 that was on the PF Foundation page but the University of Alabama did a study with mice using chebulic acid ( haritaki)from these flowers. It actually reversed the scarring in their lungs. I have taken it for two years and my Ct scans have gone from moderate to minimal scarring. My lung function test have improved and I’m maintaining an average O2 level around 96%.
As stated I am NOT a Dr and am not replacing what your Dr says. I had to be my own advocate to look outside the box. My mom and two other family members also had PF. My children are taking haritaki in hopes to avoid PF.
prayers for you and all who suffer with PF. -
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 moderate scarring three times. The last scan done this past March showed minimal scarring. I’m a nurse NOT a Dr. I encourage you to research this and talk with your Dr about taking it. I truly believe this is working to reverse the scarring I had. Plus I feel so much better my lung function test was a breeze last month with no SOB or coughing as with previous test. I wish you well.
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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!!!!
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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 day and also take ofev 100mg twice a day. You should always talk to your Dr before taking it.
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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 day. You should always talk to your Dr before taking it.
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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.
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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. -
amazing! What medication and or supplements do you take?
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That’s amazing! What medication and or supplements do you take?
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You’re welcome. Praying for you! I pray you get good results!
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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 will let you know what the Dr says
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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.
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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.