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Has anyone heard about stem cell implants for pulmonary fibrosis?
My pulmonologist said, while stem cells work for some diseases, it doesn’ work for lung disease. You will be given your blood stem cells and spend lots of money, time and effort and it will not help you! A complete sham!
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@joanelle77 Here is a site for the drug 'Ofev' that is prescribed to IF patients. There is info about the disease itself as well. https://www.ofev.com/
@joanelle77 Here is another drug that is prescribed for IF patients…https://www.esbriet.com/
I am also looking for information on stem cells for IPF. I will let you know if i find any good info.
Welcome to Connect, @wba3721
I'm sure that you read through the messages of this discussion. Have you called the Mayo Clinic Regenerative Medicine free consult line? When you call the Mayo's Regenerative Medicine consult service, they will tell you about the availability of approved stem cell therapy at Mayo Clinic and elsewhere, and for what conditions. They can also tell you about research studies that are actively recruiting participants. Furthermore, you can add your name to a database to be notified when additional studies and information become available. You can learn more about the Consult Service here http://www.mayo.edu/research/centers-programs/center-regenerative-medicine/patient-care/clinical-services/regenerative-medicine-consult-service. Or call 1-844-276-2003 to speak with one of our experts.
It can be really difficult to tell which stem cell therapies and regenerative medicine practices are effective and which institutions are offering evidence-based proven therapies. In fact, recently the Food and Drug Administration (FDA) released a stern warning against unproven stem cell therapies. The FDA issued these two press statements: https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm573427.htm and https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm573431.htm.
It's important to do your research. Happy to hear what you find out.
Wba3721, are you researching about stem cells and IPF for yourself or a loved one?
Have you found any new info about stem cells for Pulmonary fibrosis?
@wba3721, I strongly encourage you to call Mayo's Regenerative Medicine consult service. They will tell you about the availability of approved stem cell therapy at Mayo Clinic and elsewhere, and for what conditions. They can also tell you about research studies that are actively recruiting participants. Furthermore, you can add your name to a database to be notified when additional studies and information become available. You can learn more about the Consult Service here http://www.mayo.edu/research/centers-programs/center-regenerative-medicine/patient-care/clinical-services/regenerative-medicine-consult-service.
Or call 1-844-276-2003 to speak with one of our experts.
I talked with them several times and was told that Mayo does not have stem cell therapy/treatment for Idiopathic Pulmonary Fibrosis. I am also in the data base but have never been contacted regarding resesrc Studies.
@wba3721 I'm glad you called. I'm sure that they explained that Lung Regeneration is a focus area of study at Mayo Clinic. Regenerative medicine has the potential to provide innovative new therapies for people with lung diseases, including chronic obstructive pulmonary disease (COPD), pulmonary fibrosis, cystic fibrosis, pulmonary arterial hypertension and bronchiolitis obliterans. Researchers have only recently moved from animal models and Mayo Clinic investigators are now attempting to recellularize human lungs. It is still very early days, which is exciting, yet disappointing I'm sure.
You can read more here: https://www.mayo.edu/research/centers-programs/center-regenerative-medicine/focus-areas/lung-regeneration
Be very careful ❗ This is a SCAM❗❗
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I'll see my pulmonologist next week. What should I ask him? After five or six years of being monitored for my slowly deteriorating lung condition–coughing, throat clearing, two or three bouts of out-patient pneumonia–I've been diagnosed with pulmonary fibrosis. Idiopathic? I don't know. According to Dr. Google, it's mild–for now. I think I'll be asked to start an anti-fibrotic. But which one? Both Olev and Esbriet sound scary. Is the medical cookbook for this disease something any decent pulmonologist can follow, or is it necessary to go to a teaching hospital? I'll be 80 in December and am in generally good health, but I do have low platelets and several other conditions not uncommon for my age.
Hello, I'm not sure how much your read on "Dr Google" (love that term!) but here is info from Mayo:
Here are some suggested questions for your pulmonologist that may help you decide whether (s)he is a good person to treat you: https://pulmonaryfibrosisnow.org/2018/07/10/pulmonary-fibrosis-14-questions-to-ask-your-doctor-after-a-diagnosis/
Pulmonary fibrosis would be classified as a rare disease, as it affects around 150,000 people in the US, or about 5/10,000. In contrast about 25 million, or 750/10,000 have asthma. So while it would be unusual for a pulmonologist to see a lot of patients with PF, many in smaller markets or mining areas may see it fairly often.
By the way, to me, all drugs sound scary. In your place, I would be interested in exploring all non-drug options like supplemental oxygen and exercise too.
I would like to hear what you learn at your appointment, and whether tou decide to keep your doc, or get a recommendation for a new one.
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