@sbstrum
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Stephen B. Strum, MD replied to the topic Control Group for EGCG + IPF Longitudinal Survey in the forum Research and Development 1 month, 1 week ago
I have investigated EGCG given the provocative literature relating to my rare disease light chain amyloidosis (AL). A major problem with EGCG is its poor absorption via the stomach. It is far better absorbed via the buccal mucosa (i.e., lining of the mouth ⇢ cheeks). I communicated years ago with Chef Albert Lauber of Neuchatel, a Swiss Choc…[Read more]
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Stephen B. Strum, MD replied to the topic Ofev exacerbated my arrhythmia! in the forum Ofev (Nintedanib) 1 month, 1 week ago
Ehud,
Drug-induced side effects are a major part of morbidity and mortality in the world. Note the year of this publication; today this issue is far worse.
Lazarou J1, Pomeranz BH, Corey PN. Incidence of adverse drug reactions in hospitalized patients: a meta-analysis of prospective studies. JAMA. To estimate the incidence of serious and…[Read more] -
Stephen B. Strum, MD replied to the topic continue OFEV if my CT and PFTS are worsening? in the forum Ofev (Nintedanib) 1 month, 1 week ago
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…[Read more]
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Stephen B. Strum, MD replied to the topic Life span in the forum Diagnosis Information and General Questions 1 month, 1 week ago
This is a 3-wk follow-up
I have 191 papers (most I have read), on the topic of Terminalia chebula, known in India as Haritaki (and other names too). Your post, Kim, led me to the paper, J.; Yang, S.-Z.; Zhu, Y.; et al. Targeting mechanosensitive MDM4 promotes lung fibrosis resolution in aged mice. Journal of Experimental Medicine and this pu…[Read more]
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Stephen B. Strum, MD replied to the topic Tests interval in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 month, 2 weeks ago
Margaret and Mary Francis,
I am pasting part of your post below in order to answer in context.
Mary Frances – My PF is radiation induced (breast cancer) and steroids are the treatment for it as they are for PF caused by hypersensitivity. They are used for IPF exacerbations but don’t stop that type of fibrosis. High dose prednisone causes seri…[Read more]
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Stephen B. Strum, MD replied to the topic Tests interval in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 month, 2 weeks ago
This reply is written with hope that patients will work together to improve the lot of all patients. Fundamental principles in medicine have been forgotten. Examples are
1. The requirement to obtain BASELINE studies before initiating a new treatment.
2. The need to have every patient’s medications & supplements checked for d…[Read more]
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Islam Ahmed and
Stephen B. Strum, MD are now friends 1 month, 2 weeks ago
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Stephen B. Strum, MD replied to the topic Vaccinated PF people and COVID 19 in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 1 month, 3 weeks ago
Regarding vaccination and IPF, each person must be evaluated based on that individual’s biologic landscape (IBL). I can speak to this issue from the standard of those severely immunocompromised and for those with multiple co-morbidities who are at the greatest risk of hospitalization and/or death.
You can obtain a sense of your risk of…[Read more]
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Stephen B. Strum, MD replied to the topic Bone Density Issues for IPF Patients in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 month, 3 weeks ago
I just did a PubMed ( see http://www.ncbi.nlm.nih.gov/pubmed ) search on nintedanib using key words bone density, osteopenia, osteoporosis, bone resorption and could not find any peer-reviewed papers.
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Stephen B. Strum, MD posted a new activity comment 1 month, 3 weeks ago
Both are steroids that have anti-inflammation properties. Prednisone is shorter acting vs. dexamethasone with a much longer half life. Both are corticosteroids so can lead to gastric upset/ulcer, glucose intolerance that if not controlled leads to diabetes, to high blood pressure, and also to immunosuppression, and bone loss. This said, I am not…[Read more]
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Mary Frances and
Stephen B. Strum, MD are now friends 1 month, 3 weeks ago
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My mother Emily was diagnosed in 2018 with IPF. We had here on bp meds and started her on 10 mg of prednisone. It worked wonders. Then they wanted her to try Tyveso and Ofev. She cannot tolerate the Ofev and stopped. I read Ofev takes 6- 12 weeks to really get inside of her body. At the 6 week mark they added Tyveso and inhaler 4 times a day. She…[Read more]
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Stephen B. Strum, MD replied to the topic Tests interval in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 month, 3 weeks ago
I concur with Adele.
Stephen
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Stephen B. Strum, MD replied to the topic Tests interval in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 month, 3 weeks ago
Testing of patients for any illness is dependent on the gravity of the illness at baseline, the history the patient relates to the MD, to follow-up of a new treatment after baseline testing.
Per your story, I would think that something as noninvasive as pulmonary function tests (PFTs) and a six-minute walk test (6MWT) would be a so-called…[Read more]
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Stephen B. Strum, MD replied to the topic Vaccinated PF people and COVID 19 in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 2 months ago
I am surprised that those with IPF or any significant lung disease are not fully vaccinated (x 2), been boostered x 2 with the monovalent vaccine and also received at least one booster with the bivalent vaccine (Moderna or Pfizer). As a MD very much involved with SARS back in 2003 and now with SARS-CoV-2 in 2019, I think our medical institutions…[Read more]
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Stephen B. Strum, MD posted an update 2 months ago
@carlo
Hello, Carlo. I do not have IPF but am a physician working with a patient diagnosed recently diagnosed with IPF. He has been on pirfenidone (Esbriet®) for about 5 months. I wonder how many of those who have had at least 6months of pirfenidone have had stabilization of their diffusing capacity or FEV or any clinical improvement.-
I have been on Esbriet since September 2020 ( switched to generic in 2022, not sure of exact date ) when I was definitively diagnosed with IPF. There was evidence in prior CT scans, being done as a result of lung cancer diagnosis and VATS lobectomy surgery in 2012, as early as 2015.
My FEV has been very stable since 2015 with an apparent…[Read more]
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Stephen B. Strum, MD replied to the topic New Drug in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 2 months ago
I looked at the info you provided per URL. It is oriented towards a stock investment rather than presenting anything scientific. I could not find any literature on tranilast or Nuformix and clinicaltrials.gov came up with nothing.
However, in searching idiopathic pulmonary fibrosis (IPF) on clinicaltrials.gov I was shocked to see 473 trials…[Read more]
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Stephen B. Strum, MD replied to the topic Vaccinated PF people and COVID 19 in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 2 months ago
Sorry, but there is a lot of medical opinion that is misleading relating to COVID-19, vaccination, inflammation, mammography and probably a lot more. I am a physician and one that is especially interested in SARS-CoV-2. I wrote an article for the lay public back in 2003 at the start of the first SARS pandemic, and again in 2020 alerting those p…[Read more]
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Stephen B. Strum, MD posted a new activity comment 2 months ago
Dear Char,
I am familiar with the site and have been involved with patient forums since the days prior to the internet when the two major interfaces were prodigy and compuserve. I was super active on a patient site called P2P (patients to physicians) and often was the only board-certified medical oncologist answering questions submitted by…[Read more] -
Stephen B. Strum, MD replied to the topic Life span in the forum Diagnosis Information and General Questions 2 months ago
Kim & Others,
This forum is outstanding. I have always felt that the resource of human-to-human has gone essentially untapped. I try to encourage dialogue with my patients between themselves and also to have meaningful dialogues with their physicians and all healthcare personnel. Sadly, medicine for the most part has become McMedicine. I, as…[Read more]
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Stephen B. Strum, MD replied to the topic PF secondary to COVID pneumonia–did anyone receive the drug baricitinib? in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 2 months ago
Sherry, I can’t imagine what you have gone through. It sounds to me that your husband’s demise was related to pulmonary complications of COVID-19. I based this on the profile you had submitted for him but I realize this is by no means a substitute for a medical record review. There is a growing list of post-COVID-19 illnesses that fall in the c…[Read more]
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