After a few monthly infusions of Orencia with no discernable effects (+ or -), my rheumatologist has scheduled me for 2 infusions (6-hour sessions) of Rituximab 2 weeks apart starting 12 May 2025 & 27 May 2025 – stay tuned! This string of 15 replies was very helpful in making the decision to go this route – thank you all! It was also endorsed…

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My rheumatologist originally prescribed that, but I opted for something less aggressive. He subsequently prescribed Orencia (abatacept), and I received 3 front-load infusions starting on 11 Nov 2024. They were 2 weeks apart and after 10 Dec 2024, I received my first regular monthly infusion on 6 Jan 2025. He maintains that this drug is…

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My pulmonologist recommended Claritin or Flonase to alleviate the symptoms of PND. Haven’t tried Flonase due to complexity, but have found Claritin (generic: loratadine, 10 mg.) to help with PND and eustachian tube blockage that often occurs at the same time. Hope this helps!

I’m 81 and have had IPF diagnosis since May 2018. Opted out of Ofev and Esbriet. Got a diagnosis of Rheumatoid Arthritis (also, like IPF, and autoimmune disease) in June this year. Rheumatologist will be starting me on adatacet (Orencia) which is administered via an effusion process once per month very soon. Said it will benefit and…

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I asked by pulmonologist about the possibility of being prescribed Saracatinib as a “guinea pig”, and here is his reply:
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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… Read more

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… 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,… 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… 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… 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… 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… 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… 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… 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… Read more