Bruce Hawn

Good Advice.  My first pulmonologist wasn’t the greatest.  The Second, said wait, let’s first make sure it is IPF.  In particular he wanted to rule out Hypersensitivity Pneumonitis, which is something that mimics IPF.

Can certainly understand your freaking out.  I am sure all of us can.  Colin is right, everyone is different.  I am 62 and while I only discovered it 2.5 years ago, turns out a 2009 CT Scan revealed I had IPF back then.  13 years and while I don’t have anywhere close to your FEV, I feel fortunate in that I only have to be on oxygen at higher ele…[Read more]

I have a seven day pill box that I fill that has morning and evening compartments for each day, which I leave on the kitchen counter.  After I take my morning dose I leave the lid for the morning compartment open, which signifies that I have taken my morning dose.  When it is time to take my evening dose, I close the morning compartment and l…[Read more]

Went back and looked, saying to myself, I know I am not crazy.  Now that I think about my conversation with the pharmacist, I whipped out my phone and did some quick research, and showed him the search result below without reading all of it.  Both the Pharmacist and I must have seen “OFEV a medicine that affects your immune system . . .”. and s…[Read more]

For those that are interested, I got my third shot (Moderna) 6 weeks ago, have had no issues.

I argued with my pharmacist.  I am on OFEV and pointed to language in the accompanying drug literature that says OFEV affects the immune system.  Pharmacist said that was good enough for him.  I know lots of people, who just went and got one no questions asked.  Have heard of lots of people lying and getting one as well. Seems that the booster sho…[Read more]

I had a very thorough Pulmonolgist. A Broncoscopy revealed I had a very high white blood cell count,  This meant that I could have had hypersensitivity pneumonitis (“HP”), which mimics IPF’s honeycombing pattern you see in CT scans. I was put on IV prednisone 1,000 mg per day for 3 days in a row every four weeks for 3 months. At the end of which…[Read more]

I had a very thorough Pulmonolgist. A Broncoscopy revealed I had a very high white blood cell count,  This meant that I could have had hypersensitivity pneumonitis (“HP”), which mimics IPF’s honeycombing pattern you see in CT scans. I was put on IV prednisone 1,000 mg per day for 3 days in a row every four weeks for 3 months. At the end of which…[Read more]

I started off on Esbriet.  Had a real tough time with sun issues. OFEV, I have tolerated well. If you go the OFEV route, the closer you stick to 12 hours apart the better. Wish you the best.

Jerry, do you have contact information you can share to contact the group that is giving you the umbilical stem cell injections?

My mother & grandmother both died of IPF. I am 3rd generation with IPF. I paid $3,000 to get genetic testing. Results were something they had not seen and so I have to get my telomeres tested if short most likely means familial an if not they will stick with inconclusive. Once I get my telomeres tested if they are short, then they can test my…[Read more]

My understanding is that you lose your eligibility to participate in their co-pay program, once you go from private insurance to Medicare.  Have to be privately insured.  Not sure why, but am sure that is one of the ways, maybe only way, you lose eligibility for the OFEV copay program, other than cancellation of the entire program.

I was on on Esbriet and for first 2 months no problem. After that hyper sensitivity to ANY sun exposure. Finger tips & knuckles cracked open, rash on skin. Horrible itching. Docs took me off & put me on OFEV. Much better no such issues.

I have been taking Green Tea Extract for about a year now. My thought is that it can only help.  I have lost weight, but I am overweight and have been trying to lose weight.  I do not believe that the Green Tea Extract has assisted in my weight loss, unless it somehow helps increases will power to cheat on diet or sticking with regular e…[Read more]

I am a 60 year old and recently switched from Esbriet to OFEV,  had horrible skin issues with Esbriet.  I was extremely nervous about OFEV because my Esbriet welcome package contained a bottle of sunscreen, and that didn’t work out so well for me. OFEV’s welcome kit with Imodium did scare me.  In talking to the various people with OFEV, they al…[Read more]