[Judith Stryker-McGill]

I have a hiatal hernia diagnosed from a CT scan. My symptoms are a sensitive gag reflex with frequent vomiting especially after drinking a large amount of liquid or taking multiple pills at once. I fill full after eating a small amount. I have nausea and lack of appetite but that may be due to OFEV. I do not have chest tightness or pain that you described. It seems reasonable that some of your symptoms are related to hiatal hernia and PF. A hiatal hernia can cause regurgitation which they believe is one cause of pulmonary fibrosis. I had a surgical consult for a HH repair but the surgeon said that I am too high risk due to PF. I am going to get a second opinion. My personal opinion is that you should find out what type of HH you have and its size. Then you doctor can determine if either meds or surgery is the best option – or hopefully will tell you that you need neither!! Good luck – it is a complicated situation.

[Judith Stryker-McGill]

Try The Assistance Fund (TAF)
https://tafcares.org/
Phone: (855) 845-3663
Monday – Friday, 8 a.m. – 7 p.m. ET

[Judith Stryker-McGill]

My hiatal hernia was found by CT during my work-up for PF. I started OFEV in September 2020. Within weeks I developed the usual side effects. About 3 months after starting OFEV, I developed abdominal pain. Liver function tests, gallbladder studies, EGD, and upper GI series were negative. I thought the pain might be due to the hiatal hernia and so I had a surgical consult. I thought the procedure would be simple, but the surgeon explained that it is a complex surgery and takes several hours. The surgeon was reluctant to operate because of my compromised pulmonary status. I did not follow through with surgery.

About 6 months after the surgical consult, I stopped the OFEV for 2 weeks while on vacation. My abdominal pain resolved. All my OFEV side effects including diarrhea went away. Even after restarting OFEV, the pain and other side effects did not return.

I have had GERD for years. The gastroenterologist who did the EGD prescribed Protonix 40 mg twice a day and fomatidine 20 mg before bed. This controls the GERD.

My hiatal hernia is large, and I wonder if it impacts respiration. My internist said that it probably does not, but it seems to me that since part of the stomach is pushed into the thoracic cavity the lungs would be affected.

We know that GERD may be a causative factor in PF. I hope that everyone with PF has a gastroenterologist or primary care doctor who aggressively manages GERD.

Has anyone had their OFEV side effects decrease after a “drug holiday”?
Judy

[Judith Stryker-McGill]

Hello everyone,
Have any of you who have taken prednisone (for any duration, dose or method) shown improvement on your PFTs in any of the measures? Thank you for sharing your experiences. I have so much regard for all of you!

[Judith Stryker-McGill]

I have IPF and received the Pfizer vaccine in May and the booster in August. My husband, who does not have IPF and is not immunocompromised, received the vaccine in May and the booster in October. About nine days ago, he developed a dry persistent cough which lasted one day. Three days later I developed the cough, fever, aches, and fatigue. We both tested positive two days after my symptoms started and received monoclonal antibodies two days after the positive test. It has been two days since the infusion and I continue with the fatigue and cough but am afebrile, my sats are unchanged and shortness of breath is no worse than usual. I believe that without the vaccine the outcome would have been much, much worse. I am so grateful that the vaccine was available.

[Judith Stryker-McGill]

I feel badly for you, Mark.  I am not a physician and cannot even suggest a diagnosis, but these are my thoughts. Have you been worked-up for auto-immune disorders (lupus, RA, etc)?  Does the NHS cover genetic testing?  As you know, you need to get the GERD under control.  Elevate the head of your bed with a wedge or blocks under the bed’s legs.  NO eating 3 hours before bed.  Fomatidine and/or prescription proton pump inhibitor.  Can you get a psych evaluation – that would demonstrate that you are not nuts?  If you can afford it, I would get a complete work-up at the Mayo Clinic (Rochester MN).  Assuming that is not an option, I would definitely change primary care providers.  Congratulations on cutting down on cigarettes!!  I hope that you find the help that you need.   Judy