[bill-s]

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 showed “ground glass”.  Immediate referral to a pulmonologist for High Definition scan that showed ground glass as well.  All pulmonary function tests, 6 minute walk, and O2 were all normal, however you have ground glass so you must have IPF.  Never mind that you had a 50 year career working with resins and ketones.  “Start on Ofev 150 immediately and hope you live beyond three years.”  Subsequent annual function tests were always normal.  I did not appreciate my pulmonologist’s casual observation attitude and sought a second opinion.  That second opinion after an intensive clinical evaluation and High Def CT scan resulted in an opinion that you DO NOT HAVE IPF!  Ground glass, yes, but to a minimal degree, no more than the original scan from 2017 showed.

[bill-s]

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 strange, my second opinion pulmonologist has raised strong suspicions that my IPF is a misdiagnosis, as I have no symptoms after two years.  My PFT’s are all normal, I maintain 98% O2, and my HD CT scans show no progression.  He plans to wean me from the Ofev and follow up in 6 months.

Bill Schumann

[bill-s]

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 Imodium, but it supposed to be effective in 10 days.  Has anyone heard of this med or is using it?

Bill S

[bill-s]

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

[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 $10.00.  They have not asked for my tax return as BI did.  It seems there are several charitable funds but not all participate with IPF and have different income levels to qualify.

[bill-s]

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 effects, to a very good degree, with Imodium A&D.

How do you manage your social situations?  Do you tell your hosts that you are now vegan and will bring your own banana and rice bowl?  How do you discreetly use the bathroom in their home if/when the need arises?  Thank you, Bill S

 

[bill-s]

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

Bill

[bill-s]

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 Dept.  He has been using the Lung Health Institute of Nashville for periodic stem cell injections since then and is doing well.  He admits not everyone has success and America being as litigious as we are explains the law suits and accusations.  He did not offer any current statistics as to his lung function or to costs or insurance coverages.

Unfortunately, my pulmonologist did not have any knowledge or insight regarding stem cell therapy.

[bill-s]

Christie and Dr. Salzberg,

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

Bill

[bill-s]

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!

[bill-s]

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 recreational exercise, no problem.  Blood O2 was always 98-99, no respiratory issues.  Then, mid May, I started cramping while walking golf or with my wife.  18 holes went to 9 using a cart to finish.  Burning numbness would start in my buttocks, radiate down the back of my legs and end under my feet so bad that I would no longer feel where my feet were on the ground.  By August I was using a cart for 18 holes.  My back has never hurt during this time.  All symptoms disappear within minutes of sitting.  My breathing was never labored.

My PCP says neuropathy, peripheral neuropathy ( me, yes OK) I am not diabetic.  MRI shows some arthritis and disc compression and the neurosurgeon wants to fuse two segments of my lumbar spine (me, not OK).

My feeling is that there are too many symptoms to this IPF and/or PF, and ILD that mask themselves as symptoms of other diagnoses.  I have an oximeter and have used it after a 6 minute walk with my O2 remaining 98-99.  A 6-7 minute walk for me is 1/3 mile and also the first sign of cramping.  I plan to take my oximeter golfing and walk until I can’t and then see what my O2 reads.

[bill-s]

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 Dr. Coleman of the Lung Institute in Nashville.  He also has clinics in Tampa and Scottsdale.  His stem cell donor site has been from his hip, ( iliac crest I believe).

Of course, being interested in any therapy to beat this, I have been reading about stem cells from umbilical cords, adipose tissue, our own fat, and also centrifuged blood from oneself, ( platelet rich plasma-platelet concentrate PRP-PC ).  Blood drawn, centrifuged for platelet separation and concentration and then infused back into oneself.  PRP-PC I think, was initially intended for orthopedic issues and injuries.  It has been realized to have other benefits.  I plan to have a conversation with my pulmonologist about these therapies when I see him mid September.

Bill Schumann

[bill-s]

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 United pilot I had the chance to converse with recently said not to worry the plane is equipped to handle “emergencies”.  My PA also said I should be good to fly.  Everyone’s personal experiences carry weight with me. Thanks, Bill

[bill-s]

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 to continue scanning.  That one came back positive with scarring present.  Followed up with a pulmonologist who ordered a deeper scan that came back positive.  More testing with the walk, lung volume, ruling out arthritis, and a Dx of IPF.  I was declared a low “normal”.

I think I will investigate First Class Medical and get the scoop on rentals, battery durations and weights.  I know British Airways and  KLM has a MD form they want filled out which I’ll download.

I have an Appt. next month  with my PCP and Pulmonologist in September and have one of them fill them out as well as the Rx.

I am not understanding the cabin pressure issue.  If cabins are pressurized and people are breathing normally at 30+,000 feet why  are we exposed to inadequate oxygen above 10,000 ft?

Thanks

[bill-s]

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 travel, and am concerned as to how I will be then compared to today.  How much lead time should I allow before committing to needing O2 and a POC? I realize that its probably impossible to predict an exacerbation or any degree of deterioration.  Can I rent a POC?  How long does it take to procure one?  Who are reputable dealers? What is reasonable cost? I see the Inogen G5 has a battery life of 13 hrs. which sounds  like 1 1/2 times a flight duration to Croatia.  How many extra batteries should you take with and how heavy are they?  Any experiences and/or advice is appreciated.

Thanks,

Bill S

[bill-s]

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 take Nexium or Prilosec once or twice/day?  Has there been any reported acute exacerbations while taking Ofev or Esbriet? How often should a 6 minute walk be administered?

I am 75 and was Dx’ed 09/2020 and started on 100 mg Ofev 01/21 with no issues.  Started 150 mg subsequently and have an occasional  predictable day of diareaha with no nausea that one dose of Imodium  handles.  I have never suffered from GERDS symptoms in my life and I don’t cough. My only complaint is excessive flatulence.  I have an oximeter that reports 98-99, but at rest.  I plan to take a 6 minute walk around a neighborhood track, rather than back and forth.  Will that be legit? I sleep with my head and thorax elevated 5-10 degrees.

 

I am also recently involved with an acupuncturist and her herbal powder formula.  I have asked her for the ingredients so I can compare her formula to Wei Institutes Soups A and B with the LC balancer.  I do wish East and West medicines  would speak to each other.  I am skeptical for the lack of scientific evidence the East publishes, but I am throwing everything at my disposal to combat this diagnosis.

[bill-s]

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

[bill-s]

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 yours in that you can store the results on your phone app.

Nexium.   I am on my first dose of it; OTC.  The label says its 20 mg. and is for 14 days ( 14 caplets).  Does anyone know what to do when 14 days is up?  The label says not to exceed 14 days unless directed by one’s MD.  I haven’t received any directions.  Neither do I have my latest quantitative blood test results for liver function other than “they are in the normal range…”.  I am on the verge of exploring  another IPF clinic.

 

[bill-s]

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 oximeter at 2:00.  It registered 98-99?? I went home and slept sitting up the remainder of the night and felt OK the next day.  I have the same issue with my pulmonologist; a feeling of benign neglect.  Telehealth doesn’t work for me.   Do you use a spigometer (sp) to measure lung volume?  That is going to be my next purchase.  There has to be some method of measuring one’s progress or regress.  I feel the same you do, Terry, if it wasn’t for this forum I would be completely in the dark.

 

[bill-s]

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 that its OK? to moderate your Ofev intake as necessary; stopping the 150’s and returning to the 100’s until side effects abate or quitting entirely for a period of time and then resuming.  I am also very interested and pursuing herbalists and Eastern medicine as well as the Wei Institute.  I am 75 and “healthy” and feel I have caught this disease at its onset. I have not investigated a transplant because of my age being a nonstarter. This string is incredibly helpful, and makes feel like I’m part of a team. Thanks everyone!