continue OFEV if my CT and PFTS are worsening?

[Samuel Kirton]

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 …

[Diane B]

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.

 

[Charlene Marshall]

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.

[Stephen B. Strum, MD]

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.

 

 

 

 

 

 

 

[Jackie Kalina]

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

[Kim Morrison]

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.

[Kim Morrison]

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.

[Marsha]

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.

[SallyB]

Charlene, I am so sorry to hear of the devastating losses you have been through. Finding some support and more information about IPF must be a top priority for you. I have a rare autoimmune lung disease (not IPF) that causes progressive fibrosis, and I found that there is a Facebook group for those with my disease. I joined and found a wonderful community of others with this disease. It was great for me as a newbie and answered a lot of my questions, and I continue to learn about my disease in the discussion. Right now, Ofev is a big issue for us, so we discuss all facets of using it – side effects, cost, effectiveness, etc. I checked to see if there are Facebook groups for those with IPF and there are several. You can check them out by searching for idiopathic pulmonary fibrosis. I think you would find these groups to be great sources of support. Best wishes.

[Mike Greenwald]

Charlene,

I am into my 4th year of taking OFEV and since originally starting, my pulmonologist continues to comment that my fibrosis is not worsening. Early on I was deep into looking for other things I could be doing / taking to get a better long term prognosis. What I came upon was Green Tea Extract, which is used in eastern medicine. It is an antioxidant. In discussing this with my pulmonologist I found that he was involved with studies of this himself. Although he did not urge me to use it he did not discourage me either. Personally, I like to believe that it is benefiting me and I will continue using it.

As well as having IPF, I also am diagnosed with PAH (Pulmonary Arterial Hypertension). This is not uncommon to occur with IPF. If you are easily fatigued (overly breathless) you might want to be checked for that. For the PAH my Cardiologist has me on a medication called Tyvaso. It is an inhaled vasodilator and has helped me alot in the area of quality of life.

<font color=”rgba(0, 0, 0, 0)” face=”inherit”>Like Ofev, Tyvaso is also very expensive, but financial assistance is available from multiple sources. A Cardiologist can likely </font>assist<font color=”rgba(0, 0, 0, 0)” face=”inherit”> you there.</font>

Best of luck to you on your journey through this. I know it is exhausting, and can be very disheartening. I try to focus on faith and friends to make each and every day a blessing.

Mike

[Terri]

Hi Charlene – I had a few sessions recently with a therapist who specializes in palliative care for people with terminal diseases. It helped a lot and I do feel better mentally. I’ve stopped it for now but may start up in a month or two when my workload calms down again.

[Donald Salzberg MD]

Hello everyone. I have read the comments and just want to say how moved I am by many of the comments and suggestions that have been made here. Like Dr Strum I am a physician that knew nothing about pulmonary medicine until I got diagnosed five years ago at age 63. I have also been constantly looking at various options of treatments and supplements that are out there.

The studies definitely show that the anti-fibrotic medications OFEV and Perfenidone slow down the process of fibrosis. To my knowledge these are the only two medications that are approved for the treatment of IPF. My disease is also slowly getting worse as are my PFTs. Side effects from OFEV or tolerable, although at times quite annoying. But the fact that I’m getting worse does not mean the drug is not working. I am convinced that I would be getting worse more quickly without the antibiotic.

Of interest lately is that I dropped 12 pounds intentionally, and I am breathing more easily and I am definitely less breathless doing certain tasks, such as going upstairs or walking up the hill. I have also recently found out that I have a increasingly worse mitral regurgitation (which means I have a leaky heart valve that is creating some issues with getting enough oxygen into my bloodstream). I am going to a top cardiothoracic surgeon here in Hartford and to some degree he is convinced that some of my issues with the Lung is related to the heart valve. I am slated for open heart surgery in a few months to have a repair of my valve. in no way am I under the impression that my pulmonary fibrosis will go away.

What is also interesting is that there was a comment by Mooses that she cannot have a lung transplant because she has Gerd. I have gone to the pulmonary transplant center at Jackson Memorial Hospital, and that was never brought up that because of my Gerd I can’t have a lung transplant. I don’t need one currently, but my day will probably come. I am currently 69 years old. There appears to be an association of GERD & Obstructive sleep apnea & IPF. I encourage anybody with IPF to get a sleep study to make sure you do not have sleep apnea and I also encourage you to have a cardiologist. Make sure that you have no issues with your heart valves. But nonetheless, this is quite a fearful disease. But my feeling is that again the antifibrotic medications (assuming tolerable side effects, costs, etc) should be continued to prolong the disease until they come out with something else.

Regarding supplements, I remain very cautious about them. I agree with Dr. Strum The lack of peer reviewed articles, and the variability of each companies supplements could be quite different. I just don’t feel comfortable experimenting with them even though there might be an anecdotal article about them. I do agree with pulmonary rehab, although I have not gone yet. I have finally gotten myself a personal trainer and I’m going to the gym three times a week and that is making a world of difference. Very hard to be motivated to do it, but I feel that it is absolutely helping me mentally and physically.

I just wanna summarize by saying that I feel for everybody deeply with this disease. Everybody has a different story and a different onset. If I live through the valve repair and recover, I do believe that I will breathe more easily in the end and time will tell what will happen regarding my lungs. I am very impressed with the answers I’m getting, but I have been my own advocate for many years. I think for those of you are not getting answers. Please find someone who can help you get them because Physicians don’t have the time to really delve into what you need to know & hear.

Sorry for my long message. Please continue to do what helps you and I look forward to hearing from you.