Living Well with a Bad Diagnosis - Lung Disease

Thursday, February 25, 2016

Which of the Two New Drugs Would I Choose?

We were back by noon. The tax appointment was as delightful as it was with mom earlier in the week, we ordered new sunglasses for Michael at Costco over the pass, the butcher was happy to see us and we did a quick dance through Trader Joe's. Did I mention an early lunch?

Michael has been struggling with allergies. He has been miserable. I forgot that we had some Flonase we bought for him a couple of months ago. Bingo. Cleared up within the hour. We both also took a nap before we headed to the city for the Board meeting at my university hospital.

It was fun to see everyone at the meeting, we started talking music and discovered that half of us were musicians! Love that! Also, one of our members had been going through a bone marrow transplant and, for the two years we have known him, he never looked better than last night. That was so great to see. It was a fun meeting. An interesting meeting. We drove home feeling like we contributed to the discussion.

Today, Sherman will be waiting for me at the rehab class. I am excited to see if I do as well today as I did on Tuesday. When we were walking back to the car last night, there was a slight uphill and I became short of breath. I have walked that same sidewalk and never was that short of breath before. Maybe we were walking too quickly. We'll see what my saturation numbers are today.

I have been asked which of the new anti-fibrotic drugs to treat IPF I would personally choose. One is Ofev and the other is Esbiet. I have been referring to them by their drug trial names: nintedanib and pirfenidone. The drugs have come to the public from two different pathways (drug joke). Ofev is an old cancer drug that was relabeled while Esbiet is a brand new drug. One took a few short years to get FDA approval while the other took over a decade and $100M. The old drug, Ofev, has been around, the researchers understand the pathways and how the drug works. Even after a decade, they do not understand exactly how Esbiet works only that it slows down the march of the disease and the loss of lung capacity. The story of who realized this old drug actually slowed down IPF and developed Ofev is HERE.

So, which would I personally choose? The old drug. We understand it. We know why it works. We know about any long-term issues with the drug. It's been around.

But, here is the BUT: If I was not getting the expected slowing of the disease after being on Ofev, I would switch to Esbiet.

Sadly, since I have HP, I am not allowed to take these new drugs until it is proven that they can also help my disease.

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