[J L LaBrack]

Hi–
Compiling data sounds like a good idea! The pros don’t seem very motivated to expedite new treatments–or better yet, a cure! I’m sure there are some really good pulmonologists out there, but I’ve yet to find one–even Mass General Brigham was no help. Every medical school has someone who graduates last in their class every year, and there’s a medical school somewhere in the world that’s rated last in pulmonology. That leaves us to become our own advocate in most cases. They’re more interested in COPD, asthma, emphysema, etc. than in IPF. I’m a 79-year-old male, diagnosed in May 2018 (which puts me in my 5th year). I’ve lived in southern New Hampshire all my life. I’ve opted out of Ofev and Esbriet because of terrible side effects and dubious stats about increased longevity, as well as the $100,000 per year cost. Still not on oxygen but suspect that’s coming in the not-too-distant future, although I’m still averaging 95% oximeter readings when resting (does go down to 88-89% if I go upstairs too fast. My local pulmonologist has put me on a once per year appointment to measure the rate of decline–nothing else. All in all, I’m guessing I’m luckier than many in beating the odds so far. Each day is a blessing!
/JL

[J L LaBrack]

Very sorry to hear of your diagnosis. I believe that that type of hernia is called “hiatal hernia.” Noone should have to endure that on top of this horrible IPF. With the amount of coughing that we do, it’s no wonder we tear something open, though. Only way I see is to try to minimize the cough–easier said than done… Surgery is probably not an option for most.

[J L LaBrack]

I asked by pulmonologist about the possibility of being prescribed Saracatinib as a “guinea pig”, and here is his reply:
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<div>”What is your opinion on the efficacy of subject drug to treat my IPF? The FDA granted it orphan drug status in 2019. Don’t want to participate in clinical trials because of 50% chance of placebo, but willing to be guinea pig to take it–at this point, I’ve little to lose…”</div>
<div>Thank you,</div>
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<div class=”fmtConv”>”Hi,
Saracatinib is not currently approved for IPF.  There was some benefit shown on recent preclinical models, but clinical studies are currently ongoing.  Remains to be seen what the results of the studies would be.  The only way to have access to the history of for IPF currently would be to enroll in a trial.
Thanks,” (name redacted)</div>
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<div>I’d appreciate any comments about the accuracy of that reply and comments from anyone who is currently taking the subject drug to treat IPF.</div>
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[J L LaBrack]

I’m a 80-yr. old IPF patient first diagnosed in 2018.  Never have been on Ofev nor Esbriet because of horrible side effects and very high cost.  Very close to needing supplemental oxygen as SPO2 % rate goes to mid 80s after one flight of stairs.  Recovery to @95% with 2-3 minutes.  Too old for transplant(s) and too far along for a double-blind trial (don’t want to be on the placebo side).  Saracatinib sounds like my salvation and would be willing to take it as a guinea pig (at this point very little to lose).  Is this available through manufacturer through my pulmonologist?  Anxious to hear more!!

/JL

[J L LaBrack]

Kim–
Thank you for the ray of hope! Really glad to hear that this is working for you! I’m 79+, male and 5 yrs. into IPF. Have been taking 30 mg. zinc picolinate daily for 6+ months based on a Cedars Sinai study posted on this site. Still have a 95-96% resting sat. rate with no Esbriet nor Ofev, and no oxygen. As many here have said: “What do I/we have to lose?” Questions about chabolic acid and haritaki: Where do you find it? What form and dosage is recommended? Is there a link to the University of Alabama study? I have a pulmonologist app’t. Feb. 16th and plan to run the zinc and your discovery by him. He seems much more interested in asthma, emphysema, COPD, etc. than in IPF, but is only one available in my area. You’ve really given me something to look forward to!! Hope to hear soon../JL

[J L LaBrack]

Raymond,

Your story is a real inspiration!  I’m a 79-year-old male and got my bad news in May 2018, so now in my 5th year.  Started taking zinc a couple months ago (15 mg. in a.m. and again in p.m.) with no decline so far.  I’ve refused Esbriet and Ofev because of huge $ and awful side effects.  The fact that you were taken off Ofev 3 years ago is a strong suggestion that zinc may have made the difference.  Does your pulmonologist agree that that may be the case?  Mine is clueless…

/J

[J L LaBrack]

Not long after I posted this, I increased my intake to 2 capsules of zinc picolinate per day–one right after breakfast and the other right after dinner.  My resting sat. rate remains at 95-96%, but a flight of stairs drops it down to @88% if I rush.  This is pretty much where I was before starting the zinc, but I just ordered another 180 capsules (90 days’ worth) with a lot of hope!

[J L LaBrack]

I’m in my fifth year (diagnosed in May 2018) and I guess I’m lucky to the extent that as a 79-year-old male, I’m too old for transplant(s) and not yet on oxygen.  The quantity vs. quality-of-life issue mentioned here is a prime concern for me, and I’ve made a decision to not start either Ofev or Esbriet for two reasons.  The first is the exorbitant cost (which would leave my widow without enough); and the second are the nasty side effects of these drugs.  My SAT resting rate is still 94-95%, but when it eventually lowers to 88%, I’ll have another decision to make: go on supplemental oxygen, or cash it in rather than being tethered to a tube.  Having a “rare” disease like IPF is nasty, since medical research in the U.S. is focused on more common ailments.  The reality is that no-one gets out of this alive.  Mass General Brigham has nothing further to offer and agrees that the cost-benefit ratio of Ofev isn’t worth it.

[J L LaBrack]

gill–

From what I’ve read, not all forms of zinc are equal.  Capsule seems to be preferred over liquid and the form most completely metabolized is zinc picolinate.  The optimal dosage seems to 30 mg./day for men and somewhat less for women. Also overdosing should be avoided according to most sites, as it has negative effects.  I’m getting the impression that many (if not most) pulmonologists concentrate on COPD, emphysema, asthma, cancer, etc. and really don’t know a lot about pulmonary fibrosis.  In broad terms, every medical school in the world has someone every year who graduates last; and somewhere out there is a medical school which is rated last…  Bottom line, we’ve really got to be our own advocates.

[J L LaBrack]

Pauline–

Please double check your daily dosage.  50 mg./day has been widely stated as too much, especially for a woman.  Under 30 mg. should be max from what I’ve read.

[J L LaBrack]

This is great information.  I wasn’t able to locate a local source for the form I wanted but ordered online and have started taking it!  After a bit of research, it appears that not all zinc forms are equal.  Zinc picolinate is the form that is reported to be the most completely metabolized.  Hence, I’m taking one 15 mg. capsule daily.  Too soon to detect any effects but will keep hoping.  It’s also important to note that overdosing can have negative effects.  For those who participate in the Inspire website, don’t bother to even suggest trying this!  There is a self-appointed “expert” (web name “idiothe”) who wrote a lengthy diatribe attacking me for even suggesting any possible treatment other than Ofev or Esbriet and was labeled a “huckster” for bring it up.  Really sad when the mission is to communicate experiences and share information and to support one another with this horrible affliction. I’m 78 and on my 5th year since diagnosis with IPF.  No supplemental oxygen yet, but my body is sending me signals that it won’t be much longer…  Thank you so much for passing this along!

[J L LaBrack]

I’m dealing with IPF and have been 3.5 years with no hope of getting an effective treatment, let alone a cure.  This news is a double-edged sword.  On one hand, it gives all of us IPFers hope for effective treatment and possible cure, but doubtful that we’ll see the day when the possible cure will be available–due to the massive bureaucratic system and big pharma’s influence now if effect in the U.S.  What do we have to lose by cutting all the red tape?  As it is, we’re going to die soon anyway…