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continue OFEV if my CT and PFTS are worsening?
I am lost and discouraged. My 2 brothers died of IPF this past yr. My mom died of it as well.
I am afraid and sad and just have no idea what to research, read, explore,–or what supplements to take w OFEV— or what i should do to prolong my life. I am fearful and really discouraged. Where can i find a support grp that will emotionally support me?
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8 Replies
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Charlene – I would offer a couple of comments. First, consult your care team on any supplements you should be taking with Ofev. I am not sure where you are located. The Pulmonary Fibrosis Foundation has a support group locator on their website if you are in the United States. You can search based on your zip code. The PFF also has a monthly virtual support group. You can find information on those groups on the page linked above. I am sorry to learn of the way this horrific disease has impacted your family. Can you come back to let us know if you find a support group? Sam …
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Something I would like to add is to see if your Dr. recommends pulmonary rehabilitation. I had a friend who said it helped him tremendously with his IPF. Your brother also thought it was helping him stay more fit and I think it helped his mental state as well. I wish he had started much sooner. Hugs.
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I couldn’t agree more Diane, thanks for sharing this! Pulmonary rehabilitation has helped me tremendously over the years as well and I wish it was recommended more.
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Charlene, I am an MD but am by no means an expert on interstitial lung disease (ILD) and its many variants. However, I have been in medicine for 60 years and voraciously read, integrate and have been an investigator for important breakthroughs during my lifetime. A basic in all of medicine is that if a treatment is not working, and the dosing is correct, and there are no issues compromising the bioavailability of the drug to get into the patient’s system, then you discontinue that drug. You only add other agents if there is evidence that a combination provides synergistic effects that go beyond the single agent, in this case nintedanib (Ofev®).
There are other agents available. I took a screenshot of the treatments I am aware of with supporting literature but I cannot insert the jpg into this email as I do with other forums. (I get a popup that asks for the source (my hard drive), dimensions and image description).
As to supplements, there are peer-reviewed papers that warrant not only follow-up with your local MD but also patient involvement because my profession, in general, has been taught to disavow vitamins, minerals, herbs, etc. Instead, what I have seen in my over half a century in medicine is that an active agent is confined to the back shelf of basic scientists until someone can patent it and make mega dollars. I truly wish it was otherwise. And BTW, I am a patient with a rare disease (light-chain amyloidosis) that is interested in diseases involving fibrosis because this is a factor in amyloidosis. I came across this forum in my attempts to help a man with both prostate cancer and idiopathic pulmonary fibrosis (IPF). Prostate cancer has been my main focus for the last 40 years. But I have learned early on that all of biology is interconnected and the pathways of inflammation, aging, cancer, are peas in the same pod.
When you mention your supplements you might want to list them and indicate the doses you are using. The problem I face with supplements is that the quality varies from company to company, and perhaps from lot to lot within a company. Standardization of supplements in the US is a rarity. And we do not have lab tests to tell us serum or plasma levels of the constituents of the supplement taken. An example would be Qunol Tumeric. The bottle says 500 mg tumeric + ginger. The label says 18-22% curcuminoids. Curcumin is the active constituent of Tumeric. If you are getting 22%, then 110 mg of curcuminoids in two of these gummies. Most patients do not look at the labeling and all of us do not know whether 110 mg is a therapeutic dose. The companies that sell these products are motivated just as big pharma is: profits. Other countries like Germany have the German E Commission that is strict regarding issues of efficacy and standardization. We are in the wild wild West, sadly.
I would advise patients to network into mini-Manhattan projects and learn how to search the literature. You can use Google, but even better is Google Scholar https://scholar.google.com/. You can use PubMed which you pay for with your taxes: http://www.ncbi.nlm.nih.gov/pubmed
If you work together and select one focus at a time you will be surprised at what you find.
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I am so interested in your comments. I was diagnosed with IPF 3 years ago. I was taken off of OFEV as I had no quality of life. Sleep and IBS kept me at home. I am still worried if I did the right thing but I am alive. I am 83 old woman. Have had one exacerbation and it was frightening. I have a concierge pulmonologist but I still feel I don’t get enough information. Thank you for your words. Jackie
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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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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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Charlene-
I am 62 and was diagnosed with IPF in 2018. I understand the feelings you’re having. My PFT’s are severe however I have not been able to complete the test to satisfaction due to incessant cough.
I have been told there is nothing else that can be done for me. I’ve been told that I am not a candidate for lung transplants due to GERD. I wonder if I need to have CT’s and PFT’s and continue all the meds when all I learn is that I’m worse. Stopping these tests and treatments may be a decision we will make on our own. I don’t know about you but almost every question I ask is answered with we don’t know. I feel unsupported, alone and scared. And I agree, I need ell. to be told if the benefits outweigh the risk of these meds and tests at this point. All I am learning is that I’m getting worse.
I am sorry you are going through this as well. I understand the fear and isolation and other emotions with no name! Anger! I hope you may continue to enjoy a good quality of life. I am sorry I cannot help much more than offering empathy. Take care of you.
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