Pulmonary Fibrosis Meds

My situation with IPF gets complicated bc because I have Ankylosing Spondylitis, Addison's Disease and IPF. If I take steroids to help it plays hell with my Addison's Disease and throws my entire hormone system out of my balance. Not sure if I can take preventative medications without some serious side affects. Is there anyone else with Addison's Disease taking these medications?

There are only 2 that I know of Ofev and Esbriet. Esbriet seems to have less side effects from what I've read

From what I've read, Esbriet has less side effects.

Hubby had to cut back because of occasional nosebleeds, but is still taking Esbriet.

I have pulmonary fibrosis with autoimmune features for which I have been taking Cellcept/mycophenolate for over two years now. I have had minimal side effects. All of my meds have been covered by Blue Cross Blue Shield.

My wife was on Esbriet for 6 years with no side effects until she passed away peacefully in 2020 on her Birthday and Christmas eve. She was cooking food at 1Pm but passed away that night as oxygen stopped working. Doctors at UCLA warned us that is the likely outcome for her.
Wish you the best

I took Ofev very briefly but side effect of diarrhea was too bad to continue. Right now, going to try Esbriet soon and see how my stomach reacts. I must mention that I already had some digestive issues, including GERD, Barrett's esophagus, a hiatal hernia and diverticulosis, so I don't know if it's possible to take either Ofev or Esbriet without digestive problems occurring. Good luck!

@kdwhitfield Would you please explain your autoimmune features and elaborate on Cellcept? I have genetic pulmonary fibrosis, severe osteoporosis, and several digestive issues which are making some meds difficult to tolerate. I'm having blood work done soon to check for autoimmune disorders, specifically because of the osteoporosis, I think. Any info you can provide would be greatly appreciated. I couldn't tolerate Ofev and have recently had a sudden exacerbation of low oxygen levels and palpitations with mild exertion (I think due to a Prolia injection for the osteoporosis.) Only help has been rest and oxygen. Any suggestions?

@sis1259 My autoimmune features are evidenced through blood tests, and are not attributed to any other specific disease. My rheumatoid factor is high but I don’t have any real problems with rheumatoid arthritis. My pulmonary fibrosis is also hereditary. I also have big digestive problems: my hiatal hernia has been repaired but I still have GERD, gas, and bloating. Cellcept was chosen by my local pulmonologist after reviewing blood test results over two years ago. That was when my pulmonary struggles blossomed following Covid. Mayo Clinic pulmonologists have continued to prescribe it. I have been at max dosage over two years now, 3,000 mg daily. My only suggestion would be to make sure your pulmonologists know what and how you are feeling. At Mayo they want what is best for you and can do their best work when fully informed. Asking questions and advocating for yourself is good. I wish you the best.

I also have pulmonary fibrosis with no known cause. Something I learned while trying to find a med for anxiety and depression, many have shown up on the list for causing this damage . When you look up the medication, ask if it causes lung issues .