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Just got approved for Ofev
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@krmoeller
Hi Karen,
I am new to IPF and Ofev myself. I am just starting my 3rd month of being on Ofev. I can tell you that it’s still really expensive even on Medicare — my copay is just over $500 per month which is outrageous. We can only hope that some politicians in our future will take on Big Pharma and their lobbyists and break their stranglehold on Americans … seriously, we are supporting pharma research for the entire world and no one else is paying the prices for drugs that we do to support that research. It is criminal.
But enough about the general problem. I am aware of some participants on this forum buying their Ofev from India and being completely satisfied with going that route. My pulmonologist wasn’t keen on the idea when I mentioned it but my husband and I both think it is definitely worth checking out. There is a possibility of my entering one of my doctor’s clinical trials in a month or so, which will pay for my Ofev while I’m in the trial. If I do not enter the drug trial, I will most likely pursue the drug from India myself.
If whoever wrote the posting about getting Ofev from India could please provide more details about how they went about making that contact, it would really help those of us who do not qualify for any financial support.
Best of luck to you Karen as you start on this challenge. Keep in touch!
Libby Fisher
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Thank you for your thoughtful response. I have no problem purchasing the drug from India. I did google it and there are numerous companies. If there is anyone reading this who is purchasing from India, can you provide the details? Thank you.
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@krmoeller
Hi Karen,
Thanks so much for writing and welcome to the PF forums! I’ve not had a chance to say that yet 🙂
There are a few folks on the forums who purchase OFEV from India I believe, or it has been discussed in the past. I can’t remember who they are but maybe try to do a search using key words such as “India” or “OFEV” in the search bar on the top right hand side of the screen and see if it reveals anything for you. It might give you some insight….
Chat soon,
Charlene. -
Re purchasing Ofev from India: I did a quick search on the forum site and it brought up our thread a few months ago on this issue. The posting from Thom indicated he had an Indian doctor when he was first diagnosed who alerted him to this possibility. Thom, if you are on the forum, would you please offer any additional information .. Are you currently purchasing Ofev from India? What specific website/company have you used? Etc. Any help will be appreciated!!
Thanks, Libby Fisher
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@travelingnana
Hello Libby. I’ve been on 100 mg for about 15 months. Not keeping track.
When I was first diagnosed, I realized the dr I had was an idiot. I dropped him and went to Yale in New Haven CT. The dr I had there was from india, a pulmonologist. She prescribed ofev, I told her no way could I afford it. I mentioned I read it’s available from india . She told me her mom lives in US and she ordered a sample, the daughter sent it to the lab at Yale to make sure it was the same. Apparently it was.
However with some searching I was in contact with a place called Accredo Pharmacy. For reasons I dont know of, they send it to me monthly at about $5.00 per month. I advise either calling them, or Boehringer Inglehiem located about 2 miles from me in Danbury, CT. It’s the HQ.
Good luck
Thom
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I checked with Indian Pharma Network. The response is that in India it is called Cyendiv and the cost is $550 for 60 100 mg pills and $100 shipping. I will check with others and share. While expensive, a lot cheaper than what I have found so far in the US. Boehringer Ingleheim was not helpful.
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Hi Thom and Karen.. I am getting my Ofev from Accredo.. they have very good customer service, but I sure haven’t gotten a break of any kind. I am paying $550 per month …that’s my Medicare co-pay. The first two months we were in the “donut hole” and had to pay over $2000 per month. Outrageous is an understatement. The $550 is tolerable, but still really expensive. I’ve spoken to the folks at Open Door and also the support people at Boehringer and was told we were not eligible for any help. My pulmonologist told me to call Boehringer again … she seems to naively think someone will just give us the drug for nothing out of the goodness of their heart. Maybe it’s worth another call to talk to another customer support person??
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@cynthia-comery-ferguson
I just started OFEV last month. My diagnosis is PF caused by Autoimmune disease (Ankylosing Spondylitis ) and I did not have any problem getting approved by insurance. I know this is different than several other responses and don’t know why. I am told that IPF is much more common than Autoimmune related PF and therefore you don’t hear nearly as much about it.
While the cause of our PF is classified differently, it is my understanding that the progression of scarring in the lungs is the same and that is what OFEV is supposed to do is to slow down that process of scarring. In my case, I was not prescribed OFEV for the first couple of years until the rate of scaring activity started to progress at a faster rate.
Good luck!
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Mark and Charlene,
This topic bought to mind something I read a little while back.
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John,
I haven’t had problems if I’m off by a couple hours here or there. But that is me. I have a well known cast-iron stomach. Also, as I have said before, for me, using whole husk psyllium is helpful with diarrhea, which seems counter-intuitive. It’s something I learned from working with gay men back in the 90’s and early this century. Given their Rx regimens, diarrhea was a constant. For a number of them, 3-5 tsp. in a full glass of water in the morning helped. You might have to work up to that. I’m not prescribing, just sharing. It’s the “colon cleanser” gig, not the powdered. But the initial question is that you will find your way with it. Good luck.
Rand O’Brien
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I have been taking Ofev, 150 mg pills twice a day, for 9 months. I take my morning pills at 9 with breakfast. We eat dinner at normal times, around 6 ish and I take my second pill at 9pm with a moderate snack. Usually yogurt or a peanut butter sandwich does the trick. Snacking too light tends to aggravate the stomach. Hope this helps.
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Hello Regina, thank you for providing the link to the article. This is the reason why David Shaleuly was able to be prescribed OFEV as it was previously only for IPF patients. We appreciate you! Take care, Mark.
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Hello John, thank you for the OFEV tips to avoid gastric issues. I followed a regimen similar to yours. Take care and breath easy. Mark
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I just started taking Ofev 2 1/2 weeks ago .It has now been approved for an ILD which is what I have from my numerous auto immune problems.I’m having trouble with nausea every couple of days but your answers have helped me .thx
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Hi Rand,
Thanks so much for sharing! I’ve heard that the Ginger is helpful for those of us dealing with stomach issues on Ofev, a few members have mentioned this too. I would imagine it’ll help others who are struggling with this side effect 🙂 Thanks again.
Charlene.
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So glad the responses have helped Karen! I hope you continue to do well with the Ofev and your side effects remain minimal.
Take care,
Charlene. -
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
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In reply to Carol Rubin,
I’m sorry to hear you’ve joined our ranks…no one wants that diagnosis of IPF!! I started on Ofev last April and went through the same channels to try to gain some kind of financial support. My pulmonologist was just certain that the drug company would practically give it away if I only asked — not sure what planet she was on at the time!! The bottom line seems to be the same as for college applicants — if you make a LOT of money, obviously you’re okay — if you make a low to modest income, you might get some financial support — if you make a nice living and have put away a nice retirement account, you qualify for zero support. Our monthly co-pay was $550. If you add up a couple of months like that, you could take a nice vacation, right?
I am now on a 6 month “trial period” without taking Ofev…my lung function tests were quite good at my visit in Nov so I had dropped back to the 100 mg dose, hoping it would be easier than the 150 mg on my digestive system. No luck — same old issues of nausea and diarrhea. I am thoroughly enjoying this period without the drug, but time will tell come May when I go back in for testing. I guess none of us knows how slowly or rapidly our disease will progress. I am still using the Arnuity Ellipta inhaler and extended release Mucinex. I also have a couple of small devices which can help with breathing exercise — one provides resistance, the other provides a fibrillation effect when breathing out so that stimulates the phlegm to loosen. I’m happy to provide links to either of these if forum users are interested.
Good luck Carol! We all need it with this disease. The most important thing for me has been to step up my fitness as much as I’m capable — more time on the exercise bike and outdoor walking as much as possible (hard to do in my location in the winter!). Any type of cardio exercise really helps to make coughs productive and to clear out the lungs. Plus I just feel better afterwards.
Happy New Year to all
Libby Fisher
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@carolrubin5
Hi Carol,
Thanks so much for writing and sharing your experience with us re: starting Ofev. I hope the adjustment to this medication goes well for you. It sure is expensive!
I don’t know if I can be helpful to you in terms of assistance, as I suspect you’re in the US? It’s different here in Canada so I don’t know if I have much helpful advice to share in terms of financial help. @mark-koziol, do you know of any?
I know BI (the maker of Ofev) had an assistance program, it may be worth giving them a call to see if they’re still helping patients with the drug from a financial perspective.
Does anyone else have any other advice to share regarding the cost management of Ofev?
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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
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Hi @carolrubin5
Ah, so sorry to hear that you’ve explore all those avenues with no luck! I can imagine it is frustrating, and what I find I hate with this disease, is that there is no one to blame for it so my frustrations often feel invalidated. I almost want to scream to the world, “just because we live comfortably and have the money to pay for Ofev, doesn’t mean we should”. I agree, it is certainly unfair! You have the right attitude, just so sorry you’re dealing with this.
I hope someone can shed some light on the new extract study, I’m not on it but curious if others are and/or what their experience is like.
Take good care,
Charlene.
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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
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Carol Libby,
I wasted about 2-3 months trying to qualify for assistance only to end up empty. Same story as yours. We aren’t rich, but I have recently retired, my wife is about to. The $520 per month wasn’t part of our retirement plan!!
I am pretty sure that those that prescribe medications have no idea of the financial implications. I chose to take Esbriet, because at the outsed I thought it was about $200/mo (my cost) cheaper. I was wrong.
I am hoping once we get established on our retirement income funds may come available, but at the end of the day, the Genentech price is over $10K/month. Hard to think i might get it cheap.
I am currently involved in a clinical trial. I can see the expense it takes to get these meds approved. And there aren’t a ton of us with IPF, and I understand they are a for profit business. And…if my choice is $$$$ over quality of life, for now the quality of life wins.
But at $500, i wanna be driving some little red two seater with a rag top…
Happy New Year everyone, Stay as well as ya can!
Pete Besio
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- 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.
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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.
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Goodluck Carol, let us know what you find out re: the reason you were rejected from the study. I’d be curious too, and I’m going to spend some time this afternoon looking more into the inhaled green tea study as well. I certainly agree about the difficulty of getting things done due to COVID, hopefully we’re on track to slowly get back to normal with the vaccines being started around the world.
Take care and goodluck with your quest for answers.
Char!
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Hi Everyone
I am in the UK and was diagnosed with IPF in March 2018 and have been on Ofev since November 2018 150mg twice a day. For those of you looking for Ofev outside of North America in the UK and Europe it is called Nintedanib and the UK National Health Service obtains it from Boebringer Ingelheim in Germany. I have been prescribed it with Lansoprazole Gastro-Resistant Capsules 30mg to be taken in the morning with the first dose of Ofev. Lasoprazole is a proton pump inhibitor which reduces the amount of acid that the stomach makes and helps to ease the side effects of Ofev.
I try not to have too big a meal in the evening to avoid feeling nauseous.
Thanks to reading posts on your forum I am also taking Green Tea Extract which I think helps. To boost my immune system though I am ‘shielding’ in case of covid whilst I await the vaccine I am taking vitamin D.
My FVC (lung function) has remained stable at 68% for the last 2 years and I believe that this is due to Ofev.
I hope this helps and all I can say is that Ofev works for me.
Best wishes for everyone
Bernard
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Hello Bernard, thank you for sharing. You threw out some excellent knowledge for the forum members. I’m pleased your lung function has remained stable. This is a big deal. I hope you remain stable for many years to come. Have a great day! Mark
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