[Carol Rubin]

I’ve had issues with bone loss in my teeth that can’t be attributed to anything except ofev. I also had an issue with major shifting of my teeth requiring aligners that seems to be caused by the anti fibrotics in the ofev. I can’t find any supporting documentation however. Anyone else have this issue?  Carol

[Carol Rubin]

I’m on Ofev and I’ve noticed that I’m always thirsty. Even when I think I’m hungry I’m really only thirsty! I do drink a lot of water but it doesn’t seem to alleviate the thirst!

[Carol Rubin]

Hello all. I’ve been on 100mg OFEV for 2 weeks now and have had no side effects. I also just got my first COVID vaccine and only suffered a sore arm for 2 days. I was wondering do people who have had no side effects on 100mg frequently get side effects on 150mg? I’ll be upping my dose after the first month. Thanks for any comments. Carol

[Carol Rubin]

Rachel, I’m glad you get reduced to $12 month after January. I’m on medicare as well, and I was told once I reached my $6600 deductible the co-pay would drop to about $600/month. How did yours go down so much? Does it have to do with your supplement plan or maybe your income?  I’m very befuddled by the variation in what people pay for the same drug!

I just took my first OFEV with dinner.  How soon after beginning do most people experience side effects? (if they are going to experience side effects at all) Any responses would be appreciated.

Carol

[Carol Rubin]

Thanks Charlene. I’m going to look into the inhaled green tea study on Monday. I need to find out if I was rejected because I’m not sick enough or because I live too far from the study sites. They are in Houston and San Antonio and I live in Austin (Texas). I’ll travel if I have to. It’s so hard to do anything now because of COVID.

[Carol Rubin]

1. Hi Pete.  You have it better than me. I’m on Medicare with a supplement and they cover 75% of the cost which sounds pretty good. Except it leaves my copay at $2500/month until I hit my $6600 deductible. Then I’m down to $600 and change. I won’t start until next week so I’ll see if I get any side effects. What clinical trial are you involved in? I just signed up for 23&me generic testing. They are researching ipf for genetic markers and such. No direct benefit to me but at least I get my genetic screening for free.

[Carol Rubin]

Hi Libby,

Thanks for you response. In regards to what planet your pulmonologist is from, she must be from the same one as mine. He told me “most people pay $40 month with all the help out there.” I have an appointment with him next week, and I’ll ask him! Carol

 

[Carol Rubin]

Hi Charlene,

Thanks so much for your thoughtful response. Unfortunately I have gone through BI, Open Doors, two private funders, and the truth is, my husband and I are blessed and make too much money to qualify. While we live comfortably, the co-pay will definitely eat away at our retirement funds, and that is what we live off of. It is frustrating, however, to hear of all the people who have insurance that will cover the cost, or live in a country with socialized medicine and pay nothing. However, rather than be envious of others, I choose to be thankful that other people don’t have to spend their life savings for an expensive drug. Changing the subject a little, is anyone involved in the new study on inhaled green tea extract? It is called the GALLACTIC-1 study and it is being used all over the world.

Thanks again for your kindness. Carol

[Carol Rubin]

Hi all. I just got diagnosed with IPF last month. I’m starting OFEV next week because my co-pay is $2500/mo with Medicare covering 75%. Once I meet my 6600 dollar deductible it will drop to $600. I wasn’t going to start in December when I just have to start a new deductible in January. Who are all these people who get it for free or very low co-pays. I tried Open Doors, and other philanthropies with no luck. We make too much per year. What are middle class people supposed to do? Wipe out their retirement funds for a medication that will only possibly slow the progression of a fatal disease. Also, if  you start the medication as soon as you are diagnosed, how do they know whether the med is working, since they have no idea how you would progress had you not taken it? I’m 67 and in very early stages as I still have 75% lung function. I just cough a lot and my endurance has gone down some. Any advice out there?? Carol

[Carol Rubin]

@travelingnana

Hi Libby! Thanks so much for your post sharing your personal experiences with teeth movement. While there is nothing in the literature about teeth shifting due to Ofev, the rapid change in my mouth certainly seemed to correspond with my starting the anti fibrotic. But then again I am getting old!! Fondly, Carol

[Carol Rubin]

Thanks for sharing all the dental posts. Has anyone had issues with teeth shifting out of alignment? I have noticed a dramatic shift in my teeth since I started Ofev. My dentist thinks it could be due to the anti-fibrotic nature of the drug. Any comments would be appreciated. Carol