[Dan Hughes]

MyDr started me on Ofev before it was approved for Scleroderma.

I am on my 8th month of Ofev, I would recommend to anyone prescribed this drug to eat a big, high protein meal prior to taking Ofev, or diarrhea is almost guaranteed.

the only other notable side effect is weight loss, I’m not sure if it’s the drug or my lung condition causing it, my appetite for food in the last few months has really fallen off.

[Dan Hughes]

I forgot to add.

I have been on Mycophenolate since 2017.  At my first appointment at INOVA ALD CLINIC they conducted a blood test for Scleroderma (SCL-70) test, proved positive.

in the spring of 2019 same test was negative, possibly pushed down by the Mycophenolate, and diagnosis changed to IPF and Ofev was added to my medications.  So my diagnosis went the opposite way of yours.

i am now undergoing the testing for a bi-lateral lung transplant.

[Dan Hughes]

I am 59, I have been taking Mycophenolate 3,000mg (1500 x 2 day), four months ago I was started on Ofev 150mg(2x day, at least 10hrs apart), in addition to Mycophenolate .  So far no bad side effects from either medication.

Mycophenolate, lowers your immune system, and it helps suppress the fibrosis.  Using this you have to be careful with cleanliness, colds, children, etc.

With the Ofev, they should provide training, the most important thing is to eat a full high protein meal before taking it, or you will get diahreha.

[Dan Hughes]

Charlene

My wife ad I considered it, however the cost, Airfare, rental car, hotel put it out of our reach.

I was looking at current info on it and all sessions will be recorded , probably videos, if you could not make it. My Ofev coordinator is going and a few people from our support group are attending and will present it during our November meeting.

Today, we are headed to Charlottesville, VA to attend the UVA, PF patient education day on Saturday .

Best regards,

Dan