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Do ILD meds have minimal effect?
About 2-1/2 years ago I was diagnosed with ILD. I feel fine and my pulmonary function tests are, for the most part, better than normal for someone my age (78)--except diffusion was down a little. I asked my pulmonologist if I should be taking any of the antifibrotic meds. She told me no because they have very minimal effect. Has that been your experience? I had read that meds should begin early after diagnosis.
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I’ll be 75 shortly.. same diagnosis. Also offered anti-fibrotic, but the doctor didn’t exactly oversell it. Even in Canada, the drug is in thousands monthly !
Ofev is trade name in Canada.
We’re you given a prognosis ?
Same here at 80. Diagnosed September of 2021. Any information on the medications and their effect would be appreciated.
Thanks,
Dan
My pulmonologist gave me a range of 3-5 years life expectancy i.e., as an average. But she also said she had ILD patients who are in their 12th year.
I have interstitial pulmonary fibrosis and lung cancer. I had a pulmonary function test before the surgery and my PFT was sufficient for surgery. 3 months later I had SBRT for 2 lung nodules. 2 months later I had radiation-induced pneumonitis. The PFT showed a significant decline, and my cancer pulmonologist was considering prescribing on of the two anti-fibrotic drugs but that is not his area of expertise, so he referred me to a different pulmonologist who specializes in that area. He reviewed everything and decided instead to put me on oxygen because my PF tests after the decline were stable. The fibrotic drugs can have side effects. Best to talk to a Specialist with the sub-specialty for best decision
Thank you.
Sorry for all you are going through and I wish you well.
Jim
When I was first informed I had ILD I was started on a high dose 50mg of Prednisolone. This did two things it caused an insatiable hunger which caused me to gain weight and caused severe irritation and anger issues. I am post lung transplant and am still having to take it only on a lower dose 5mg, I am sensitive to it as with some drug types I get the worst side effects. You might be different. I also ended up on Mycophenolate, when I developed a melanoma this was changed to Everolimus.
Fascinating that you are post lung transplant. Hopefully you won't find me rude but where did you have it done and how long ago? How was your recovery time? Lung transplants have always up til now been somewhat of a medical challenge. However, I see that several of the larger medical facilities have raised their age cut-off criteria from 65 years old to 75, so there must be a high rate of success! Would love to see them be able to do them robotically as Baylor just did a heart transplant using robotics. I hope you continue to do well! I hate having to take steroids when I have exacerbations. The side effects, as you mentioned are unrelenting. I truly wish that medications just would correct the issue for which they are given with no side effects. Those are the worst to deal with. I hope you continue to do well.
I am in Australia and had it done at the Alfred Hospital in Melbourne, recovery was hindered by the time I was intubated in Intensive care, this caused excessive muscle wastage and nerve damage which led to neuropathy. But I was walking within a week, I couldn't get out of bed at one stage. I had it done 5 years ago, I have spoken to some people that had it 13 years ago and one that had it 30 years ago. It is no "walk in the park" because unfortunately the medication required to stop an immune response are not nice and one of them is our favourite Prednisolone. But I have had 5 years with my kids and wife, been to the Philippines, Thailand, Singapore and Japan all things I would never have been able to do with my lung condition.