Which is better, 1 or 1,000? It depends.

Be careful when making assumptions about your pulmonary fibrosis care

Samuel Kirton avatar

by Samuel Kirton |

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When is a larger number the better choice? It depends. Recently, I’ve noticed some people in the pulmonary fibrosis (PF) community embracing numbers in studies without understanding their context. In terms of dollars, bigger numbers are better if you’re talking about savings, but smaller numbers are better if you’re talking about costs. If the issue is sample sizes, the larger number is better.

Is there something missing, though? Quite often there is.

Research and studies

In the rare disease community, hope is an invaluable commodity. In one of my early columns, I wrote about identifying false health claims found on the internet. Claims of miracle cures and treatments often draw in people who need hope, and that’s very prevalent in the idiopathic pulmonary fibrosis (IPF) community.

But if it sounds too good to be true, be suspicious.

When I was diagnosed with IPF in January 2017, my wife, Susan, and I immediately found knowledgeable and reputable resources for information. Looking at that material in context is a must. If you read the lead for this column and made a decision without reading the context, there might be some important points you missed.

The same is true of research and study materials; you shouldn’t make assumptions if you only read the abstract.

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Disclaimers are important

BioNews, the parent company of Pulmonary Fibrosis News, publishes a disclaimer at the bottom of every column. Look below and read it now.

The words are easy to overlook, but they’re critical to the PF community. News articles on this site convey important research and information. The columns I write share my lived experiences, including details of my treatments during my journey.

Please, I beg of you, don’t change or stop taking a dose of a medication without consulting your care team. Don’t start taking over-the-counter medications or vitamin supplements without checking with your doctors. Medication management is a full-time job, and your care team is a necessary part of it.

Social media is not for medical advice

Questions posed on social media scare me the most. Asking someone to share their experience with a specific medication is a great use of these platforms. Realize, though, that we’re each a unique case study for our disease. For example, two anti-fibrotic therapies for IPF have been on the market in the U.S. since 2014. I took one of those medications, Esbriet (pirfenidone). I’m comfortable sharing my experience with it, including the dose I took, the timing of doses, and any side effects I experienced.

But I wouldn’t recommend that you reduce your dose or add a supplement to your medication regimen. It’d be dangerous for me to say such things. That type of advice is best left to members of your care team, who understand the medications you’re prescribed.

Likewise, making your own decisions about reducing or stopping a medication can have negative consequences. Some medicines can’t simply be stopped or increased. Prednisone, in the PF community, is a good example. It must be titrated by professionals to modulate the levels in your system.

Research and studies to trials

If you follow research studies to learn about some of the amazing work being done, you’ll see science at its best, as it tries to prove or disprove a hypothesis. In pulmonary fibrosis research, as with many diseases, a mouse model is often used to develop human drugs. Not all studies are successful enough to result in a human trial, but any study can contribute to a better understanding of the disease.

Nonetheless, making changes to your medication based on a promising study is not wise, especially without consulting your care team. You’re pinning your hope on something that’s not proven.

Not a lecture

This column isn’t a lecture, but it’s written to help you. There’s a kinship among the PF community, and we help one another whenever possible. Pointing out my concern with what I witness on a far too regular basis is how I make every breath count.

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.




Hi Samuel. I thank you for this article. It is so well written and so important. I have IPF diagnosed 9/2018 (I opted for an open lung biopsy as initially it was felt to be Hypersensitivity Pneumonitis). I am also a retired MD so sometimes I read comments or stories and I bite my tongue (on what some physicians/providers are recommending). So true about steroids. Still amazes me that in the past 10 years only two meds are approved for IPF & so few candidates are taking/prescribed them. I’ve read <50% of candidates have ever been started on these APPROVED meds, plus so many discontinue due to side effects. I’ve been on OFEV 150 mg 2x/day for 5 years and my progression is slow (Im 69). I will take bouts of occasional Diarrhea, bloating and fatigue knowing this awful medication has been strongly shown to slow this down. Why wait for it to get worse and then start the meds? When I treated glaucoma the KEY was to start treatment before the condition progressed. I’m not a huge supplement guy but I do take zinc 50 mg/day. Maybe Omega-3’s have a place along with other things. I trust the studies that were done on OFEV & Perfenidone and my Pulmonologist put me on OFEV s soon as my pathologist confirmed I had IPF. THANK YOU AGAIN for your valuable suggestions.
Don S

Samuel Kirton avatar

Samuel Kirton

Doctor Don,

Thanks for reading my column and your feedback. I am glad you found the column valuable. Each patient has a role in their care team structure. Striking out on their own is likely to be more harmful than helpful.

Sam ...

Adele B Friedman avatar

Adele B Friedman

So true. Tired of people thinking that if one person gets a side effect they will too, or benefit for that matter. And the enthusiasm for tiny studies in mice--with nothing proven in people, need to be taken in context.

Samuel Kirton avatar

Samuel Kirton


Thanks for reading my column and your comments. Each of us is unique in our experience on this journey. I was fortunate when I was taking Esbriet prior to my transplant the only side effect I experienced was extreme sensitivity to the sun. Also, your comment regarding studies and context is so true. Let the investigator for the study find a path to go to the next level of validation.

Sam ...


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