February 3, 2020 at 10:10 am #22810Pulmonary Fibrosis News ModeratorParticipant
For Charlene Marshall, a major takeaway from attending the Pulmonary Fibrosis Foundation (PFF) Summit in Texas last fall, was how much research is being conducted for those living with IPF. Some of the most fascinating research is investigating how medications that have been on the market for a number of years to help other disease, may help slow or stop fibrotic progression in patients with IPF.
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This article specifically mentions the possibility of using statins (for cholesterol) as a potential therapy for IPF. What are your thoughts on using common drugs/medications that are currently in existence to treat IPF?
February 3, 2020 at 5:51 pm #22816Luke R MatthewsParticipant
Hi, does anyone know what strength the statins were when given in the study to see a reduction in the fibroblasts.
Luke R Matthews
February 3, 2020 at 9:05 pm #22829
February 4, 2020 at 11:24 am #22833Stephen GouldParticipant
Interestingly, I stopped taking statins due to the European studies that showed them as a likely cause of PF. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3297101/ While it may have been primarily for former smokers, statins are contraindicated for that group. With all of the other known side effects of statins, I now use the Repatha injectable.
I was aware of the contradictory studies when I made my decision to stop taking statins.
February 5, 2020 at 7:44 am #22842
Thanks for sharing your experience, and the link to the article on statins being linked to PF. Hopefully with this new contradicting research, folks can conclude the risks of developing PF on statins applies only to the population of former smokers. I can’t confirm that as I haven’t read both studies, but hopefully two research papers aren’t revealing two completely different things re: statins. Fingers crossed! I’m glad you’ve found a solution that works for you.
February 5, 2020 at 8:42 am #22849Jofac O’HandlinParticipant
Hi Charlene, I would like to follow up on Steven’s comment on the statin link to IPF.
I emailed my cosultant about prescribing symvastatin and got the paper prefered to by Steven. However I read the paper (not understanding a lot) and found the crucial line in the third paragraph from the end which showed that there were two groups of statins (likely more), and that they had focused on the ‘harmful’ group of the reseach. Crucially, they stated another group which included symvastatin that reacted differently, and which MAY be positively from an IPF viewpoint.
Bearing in mind that Boehringer tested some 13,000 posible candidate substances and found that symvastatin seemed to be one of a very few prospective candidates that MAY be positive for further IPF study. I feel that my consultant is too busy covering the wide range of COPD to delve into the detail.
I feel that I have entered my last year, and prepared to ‘have a go’ at any likely candidate that might arrest the progress from my ‘going over the cliff’!
I will pull out the relevant phrase from the research paper on statin and cigarette smokers for the forum to judge.
February 6, 2020 at 10:39 am #22856Dave SabatelliParticipant
Hi Charlene this is very interesting I take Atorvastatin, Esbriet how can I access the research paper I would like to share it with my PCP Dr and Pulmonary Dr. Also I noticed the replies use PF and IPF was the research paper for both or just IPF? After reading this and other articles I see the need for my wife and I to attend the next conference. Dave
- This reply was modified 1 year, 9 months ago by Charlene Marshall. Reason: formatting
February 10, 2020 at 9:21 am #22908
This is really interesting information, especially the two groups of statins and some emerging as (potentially) beneficial for IPF and others not. It would be important to note that in the study to help readers better understand. I wonder why they’d focus on the harmful category of statins, as opposed to the beneficial ones? I suppose maybe they could only do one group at a time. I hope more research and testing emerges about symvastatin. Sorry to hear your physician’s focus is COPD – very important, but not for those of living with IPF and are patients of the same physician.
I’ll go back and read this article in greater detail. Thanks for reaching out Joe! Do you think you’ll be able to try any of the statins for IPF at this point?
February 10, 2020 at 9:23 am #22909
Let me ask our science writers if they can pull the article for you, and I’ll send it via email if you’d kindly provide me with your email address? Please feel free to send via my email: [email protected]. It would be interesting to denote if it is about PF or IPF, but I understood it to be about IPF primarily. I’ll follow up and see if I can obtain the paper for you.
February 12, 2020 at 10:33 am #22939jaime L manriquezParticipant
refering to your question, my pulmonologist presccribed me statins for the respiratory track inflamation only , Prednisone work better for me . The studies in Rats showed that metformin it might help on reversing fibrosis, not approved for humans yet…Also Azithromycin it is been tested for ipf …hope some of this will cure this horrible desease some day. Best regards friends.
February 13, 2020 at 10:37 am #22953Betty EdwardsParticipant
I recently started taking the statin Crestor. How do I find out if it is the good or bad kind for ipf?
February 13, 2020 at 6:08 pm #22973jaime L manriquezParticipant
I was in Crestor long time ego( 2 years) for my IPF 1 month, Gave me lots of bones and muscles pain, so I quit, in 2019 I was on atorvastatin wich is about the same , for 1 month no results, my pulmonologist precribe it for Respiratory track inflamation , did nothing on me, Now Im on Prednisone 5mg a day, good results…… best regards
- This reply was modified 1 year, 9 months ago by Charlene Marshall.
February 14, 2020 at 11:04 am #22989
Really good question — although, it isn’t something I’d be helpful in answering likely as I don’t really understand a lot about statins. Might this be something you could ask your doctor about, and see if he/she understands the relationship between statins and IPF? If they aren’t sure, maybe do some research using credible sources (ie. NIH) and see if there is anything out there on that particular statin. Really good question, though sorry I can’t say I am familiar enough to answer it for you.
Has anyone else started Crestor and heard how it relates to IPF?
February 26, 2020 at 8:28 am #23136Dave SabatelliParticipant
Thanks Charlene for the research paper. I read some of it but I’m a “gear head” so I let my daughter Angie (medical technologist) read it. Her reply “The section on page 12 states the results indicate that statins were able to attenuate established lung fibrosis in the mouse. Attenuate means to lessen the amount or reduce”. Looks like the research community is chipping away at this disease, I also sent this to my pulmonologist I’ll let you know if he replies. I take Atorvastatin it clearly did not keep me from getting IPF but with Esbriet, Atorvastatin and caffeine (read the attached link) I hope to slow the progression of IPF.
“Caffeine inhibits TGFβ activation in epithelial cells, interrupts fibroblast responses to TGFβ, and reduces established fibrosis in precision-cut lung slices”. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4893128/
- This reply was modified 1 year, 9 months ago by Charlene Marshall. Reason: formatting to remove code
February 26, 2020 at 8:30 am #23146
Thanks so much for submitting this to us! I had to edit the post significantly to remove the coding (which tends to happen when folks copy/paste directly into the forums) so I hope I captured everything you wrote to us. I appreciate you sharing the article. I’d be really curious to hear your doctor’s response to the article, please let us know. I hope the research can continue to be beneficial and escalate from results using mice / mouse models to humans too. Fingers crossed!
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