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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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 c…[Read more]

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 e…[Read more]

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 im…[Read more]

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.

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…[Read more]

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 s…[Read more]