Hello All,

I agree, there has to be a more consistent diagnostic clinical tree.  I was a lifetime adult smoker and when I switched primary MD’s in 2017 he suggested CT-scans to detect lung cancer; negative results and subsequent annual scans all negative.  I moved in 2020 and my new PCP suggested continuing scans and that scan was negative but… Read more

Yes, I had a 50 year career in orthotics and prosthetics and worked with wood and plastics dust, polyester  and acrylic resins, epoxies, and ketone solvents.  All in an unprotected environment.  I also smoked for 57 years.  Strangely, perhaps, I have never heard of any colleagues from my era being diagnosed with IPF or any other ILD.

More… Read more

I have been on Ofev for two years with no drop in O2 levels or rise in blood pressure.  I manage the diarrhea with Imodium.  Recently, my PCP Rx’ed Diphenoxylate-Atropine ( also known as Lomotil) to further control the diarrhea.  It supposedly slows down the digestive process, enzymes, etc.  I just started using it with no difference than… Read more

Hello all, and thanks for your response.

Yes I have Googled my way around and have found several in New England.  I have found one in Boston and have an appt. in April.  I am trying to contact one here in Rhode Island that seems elusive for some reason.  I’ll keep trying.  I am disappointed that my pulmonologist had no guidance or direction.   Bill S

Hello,

Having read Dr. Noah Greenspan’s book and his enthusiasm for exercise; I am wondering if anyone has come across or is involved in any program with a Pulmonary Respiratory Therapist.

Thanks, Bill S.

Charlene, Thanks so very much for such an informative book.  Noah Greenspan and all of you collaborators are such a light.  I have been in isolation by my pulmonologist by having prescribed Ofev being  his only intervention with no other recommendations.  I’m in the process of finding a new team.

Bill S

I am starting my second year on Ofev 150 mg.  The first year I was granted coverage by Boehringer Ingelheim (BI Pharmacy) itself with no copay.  When I reapplied for 2022 coverage I was denied for excessive  income?? Less than the qualifying year.  It was suggested I try The Assistance Fund which approved me for 2022 with a monthly copay of… Read more

Hello All,

I have been on 300 mg of Ofev daily for over a year and have been casual with my diet, eating whatever my wife decides to make for us.  I would say we eat healthy with all varieties of meats, poultry, and fish as well as all varieties of vegetables.  I will usually  have a cocktail before and after dinner.  I manage Ofev’s side… Read more

Thank you Ron,  the Medscape article certainly is enlightening.  Well, you saved me a flight to Nashville.

Bill

Hello Forum,

Just an update from last months post about stem cell therapy.  My contact via a friend finally has responded.  He was away from home.  He states that he has been an IPF patient for 7 years and was told by his MDs then that he had 4-5 mo. to live with a lung function of 18%.  He had been an arson investigator for his local Fire… Read more

Christie and Dr. Salzberg,

Thank you both again and I’m setting up a consult with an experienced PT whom I know.

Bill

Dr. Salzberg, Thank you for your opinion.  It reinforces my reluctance to jump on an operating table.  Yes, disc compression most likely but puzzled by the lack of lower back pain.  Thanks again!

Hello.

Another interesting topic of IPF symptoms.  I was diagnosed late 2020 and started OFev early 21.  I have been successful taking the 300 mg daily with the usual side effect which I manage with Imodium.  Strangely, I began the golf season walking 18 holes for my exercise and would also walk a couple three miles with my wife for… Read more

Hello Forum,

I am in my first year of IPF and have been successful taking Ofev with Nexium and Imodium to combat the effects of Ofev.  As friends of family have become aware of my Dx I have been given names and contacts of their friends/ relatives who have the same Dx.  with longer histories.  One of them is undergoing stem cell therapy from a… Read more

John and Ben,  John- you said that your O2 read 87 at 36K feet.  What is it normally at home?  Ben- you said your O2 goes bonkers at altitude.  How badly, from at home normal to altitude?  My O2 is 99 at rest and 95 after walking 2 miles on level ground at sea level.  Should I be concerned with  October flights of over 4 hours duration?  A… Read more

Replying to Duncan and Bill,  My former PCP in MA inherited me from my original who retired.  Appreciating my 50+ yrs of smoking he thought it a good idea to get at CT Scan to see my lung condition. Scan came back negative.  We agreed to repeat annually and the next two came back negative.  We moved to RI in 09/2020 and my new PCP and I agreed… Read more

Hey Duncan, thanks for the outline, and everyone else for their thoughts and advice.  I am new to IPF as of 01/21 and am doing well with vital capacity, blood oxygen, med tolerance, etc.  I think I’m breathing normally for being 75 and my blood/oxygen was 95 after a 6 minute walk today.  I am planning two trips in October, both requiring air… Read more

Hello Group,

This Forum is so calming, knowing we share so many common concerns. Is there an established published protocol that the pulmonology world follows for treating IPF?  Are annual CT Scans adequate for following progression?  How frequent should blood work be done for liver status monitoring?  I still enjoy my martinis.  Should one… Read more

Thank you Liam, I will certainly pursue your lead.  Also, Neha, thank you for sharing the lead to the progress chart.  This is all very helpful.

Bill

Hello Everyone,

Thank you all for sharing your experiences.  It seems we all are living in various levels of medical information vacuum.  Liam, which Spirometer did you choose to use?  Some appear to be more sophisticated than others and more expensive.  I don’t think I need a lab quality type but I don’t want a toy either.  I like the sound of… Read more

Terry,

Thank you for sharing.  I was Dx’ed in January 2021 and began 100 mg of Ofev without issues and have graduated to 150 mg, again without issues. Just recently I awoke at 1:00 AM feeling as though I was in a vacuum with no air.  I walked around for an hour and regained my breath, but felt labored.  I actually went to a CVS and bought an… Read more

Hello All,

I am also new to this disease and have completed my first course of 100 mg Ofev successfully with no side effects and normal liver test.  I am starting my first 150 mg course this week and so far so good. My Ofev is being covered by a Grant from BI, which I applied for.  Healthwell turned me down.  I have read in Ofev’s literature… Read more