[Mike Greenwald]

Charlene,

I am into my 4th year of taking OFEV and since originally starting, my pulmonologist continues to comment that my fibrosis is not worsening. Early on I was deep into looking for other things I could be doing / taking to get a better long term prognosis. What I came upon was Green Tea Extract, which is used in eastern medicine. It is an antioxidant. In discussing this with my pulmonologist I found that he was involved with studies of this himself. Although he did not urge me to use it he did not discourage me either. Personally, I like to believe that it is benefiting me and I will continue using it.

As well as having IPF, I also am diagnosed with PAH (Pulmonary Arterial Hypertension). This is not uncommon to occur with IPF. If you are easily fatigued (overly breathless) you might want to be checked for that. For the PAH my Cardiologist has me on a medication called Tyvaso. It is an inhaled vasodilator and has helped me alot in the area of quality of life.

<font color=”rgba(0, 0, 0, 0)” face=”inherit”>Like Ofev, Tyvaso is also very expensive, but financial assistance is available from multiple sources. A Cardiologist can likely </font>assist<font color=”rgba(0, 0, 0, 0)” face=”inherit”> you there.</font>

Best of luck to you on your journey through this. I know it is exhausting, and can be very disheartening. I try to focus on faith and friends to make each and every day a blessing.

Mike

[Mike Greenwald]

I’ve been where you are, over a number of years though. I started with a diagnosis of ILD from my PCP, progressed to a diagnosis of IPF from my Pulmonologist, eventually added PAH from my Cardiologist. I am on OFEV (prescribed by my Pulmonologist) and Tyvaso (prescribed by my Cardiologist). I have Humana Medicare Advantage versus Original Medicare (something which I am very pleased with and happy about). Working with my doctors my overall copay expense has been fairly minimal.

OFEV is very expensive … about $8K per month without insurance. I have been fortunate enough to receive financial assistance for my copays and pay $0 out of pocket. For Tyvaso I am on a plan where I receive the medication for 0 from the manufacturer.

Bottom line here, as I see it, you were diagnosed with multiple disorders rather quickly, little testing was completed to support the diagnoses, and you were prescribed some very expensive medications as well. That’s enough to send off red flags for the insurers.

My recommendation is focus on the IPF, work with your PCP and your Pulmonologist to get the diagnosis supported so you can get on the OFEV. Once that has been accomplished focus on the Cardiologist. You may be required to undergo a Heart Catheterization in the process to get the PAH diagnosis. That would support the need for Tyvaso. I’ve been on Tyvaso for a year now and it has definitely been helpful for me.

I am new on this forum and not yet sure how it all works, but if you have any questions about my experiences feel free to ask.

Regards,

Mike G.

[Mike Greenwald]

I was diagnosed with ILD / IPF over two years ago (probably closer to 3) I have been on OFEV for as long. Initially I lost my appetite and with it , and I lost about 20 lbs. I had started with the 150 mg dose and was lowered to the 100 mg dose to try to mitigate the weight loss, It worked, I am maintaining now. Since being diagnosed with IPF (also I carry a diagnosis of COPD / Emphysema now as well) I have had my ups and downs. Initially I was down, even went onto Zoloft for about 4 months until I really got to the bottom of what was bothering me, at which time I got off it. OK, so now you figure you have an expiration date and it’s probably a lot sooner than you ever expected. I had believed that I was going to live to be 100, I am 75 now (not all so bad to begin with) … and I’ve had to revise my expectations. In dealing with all of this (and more actually) I find the key is to stay positive. In all ways. And stay active as much as I can. I started doing volunteer work where I had a lot of contact with a lot of (different types of) people … but I also enjoy ‘me’ time and just tinkering around the house and in the garage. Basically I do things that make me happy and that make me feel productive !!!

I’m not a doctor and I have never worked in any capacity which even touched on medicine, however I can’t help but wonder, is it the OFEV that is making you depressed, or could it be that going on OFEV was tipping point for you, which got you thinking about the changes you would be or are already going through because of your medical condition.

Whatever, I wish you the best of success in dealing with your depression and encourage you to spend some time talking to a therapist who can provide you with qualified medical expertise and ideas for dealing with it.

[Mike Greenwald]

I’m into my 4th year now.