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Non-prescribed treatments
I have seen several discussions in the forums recently where user research has led to trying non-prescribed treatments for your IPF/PF. I see very little in the comments about what your care team advised you on using the treatment. Some non-prescribed treatments can have a negative impact on your health when they interact with prescribed medications. Some therapies may impact future treatments or your ability to qualify for a lung transplant.
Shouldn’t coordinating these non-prescribed treatments with your care team be a priority?
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2 Replies
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I totally agree! I read a post on the forum several years ago by a gentleman in the U.K. who was using a high dose over the counter medication due to reading about it helping with fibrosis in a study of MICE. Although I understand that one might be desperate for a treatment, self-prescribing & taking medications or supplements without a doctor’s advice can sometimes be more harmful than helpful!!
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This is a great post for discussion @Samuel Kirton and thank you for sharing your thoughts too, Linda! I agree, one must be very skeptical of non-prescribed therapies in an organ as precarious as the lungs. I’m not discouraging folks from doing their research into various options for symptom management, especially because treatment for IPF/PF is very limited; however, it should be done in partnership with your medical team in my opinion.
Take care,
Charlene.
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