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My Insurance just approved my treatment with Ofev, Will start taking Ofev on May 28th. I know it needs to be taken 12 hours apart with a meal, so my question is….I won’t have an issue with the morning dose being taken with breakfast lets say 8:00ish, but how do you compensate the evening dose with a meal 12 hours later at 8:00pm? Do you eat an early dinner then eat again when taking the evening dose? Also, what food is most tolerable with Ofev? I’m hearing protein? Any suggestions with your experience would be welcome….Thanks. John
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Hi John,
Thanks so much for writing and I am glad to hear your insurance approved the Ofev. When you receive the medication, it will come with a package of information for you including tips on how to take the drug, track your doses etc. I find that I don’t need to have a big meal with my evening dose, but I do try to eat several small meals throughout the day (Mark did this too, I remember) so there is consistently something in my stomach then I have dinner. My snack with my evening Ofev dose is usually quite substantial, like cheese, meat and crackers. I don’t like having a lot to eat before bed, but it helps when I eat smaller meals throughout the day. I find this leaves enough in my system for the Ofev to digest. Does this help at all? I’m sure others have lots of tips to share too! I believe protein is tolerated the best with Ofev, but that has just been my experience. @mark-koziol, what foods did you eat when you took your Ofev dose, that was most tolerated?
Take care,
Charlene. -
Hello Charlene and John, I was an early riser so I would take my first Ofev at 6 am and would then take my second dose at 6 pm. John I see you are eating a lil later than dinner time. You could always split your dinner and save a lil bit for a snack or try eating with a banana. There were times I would take my morning Ofev with a banana, I still eat a banana with my meds for transplant. There are a couple that would rival Ofev on the potential damage it could do to your digestive system. My 8 am meds are set in stone for time and usually right in the middle of my workout. I find a banana alleviates any potential problem. I will also use a probiotic yogurt, which I also used with Ofev. Best thing I could say is try a couple of different foods and see how they treat you. Some people don’t get adversely affected. Hopefully you are one of them. Best wishes, Mark.
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Thank you both Charlene & Mark for your advice & suggestions & thank you both for all that you do here with these forums. It has been a learning experience for me & you’ve both been very helpful. I will keep you posted as I go along…..
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Do you have to be IPF to get Ofev? I was just diagnosed with ILD last week and they’re doing tests now to identify the disease. They suspect RA and autoimmune. If that’s the case will I be eligible for Ofev?
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Hi Cynthia,
Thanks for your reply to this topic thread, although so sorry to hear of your recent diagnosis of an ILD. From what I understand (granted, I am not a medical professional) Ofev is only approved for treating IPF. I don’t believe either of the FDA approved medications (Ofev or Esbriet) are used to treat PF, only IPF. Check with your doctor for sure though. Can anyone else confirm that this is also their understanding?
Regards,
Charlene. -
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I don’t take OFEV anymore as I switched to Esbriet in September last year. However, while I took it for a year, my doctor told me that eight hours between doses was perfectly fine. I would often eat a half of a protein bar with either dose and it helped with the gastrointestinal side effects. So did taking a half dose of liquid Immodium every other day.
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Thanks, Charlene and Mark. The diagnosis shocked me because my doctor had previously thought the cough and shortness of breath were a result of sinus issues and post-nasal drip. To go from that to a fatal lung disease was a real punch in the stomach. When the pulmonologist told me what I had I didn’t fully understand the gravity of it all and didn’t know enough to ask many questions. I see him again in four weeks — after he’s received results from blood tests, walking/breathing tests, a report from a rheumatologist, etc. — and I’m preparing a list of questions based on all the research I’ve been doing (and lots of stalking on this site). I’d like to post something asking others what I should be sure to ask during that appointment. On what forum would that be most appropriate? I’m also wondering if I should ask him if I should consult with someone in Boston (Brigham & Women’s) where there’s much more work around this disease than there is here in Providence, RI.
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Hi Cynthia,
Thanks so much for writing and replying to this topic thread.
Yes I can only imagine how much of a shock the diagnosis was for you. Sadly, that day for me (when I was told I had IPF) is forever etched into my memory; it sure was tough. I hope you’re giving yourself some grace around this news, along with time to process and grieve as needed.
Great idea to prepare a list of questions for the Pulmonologist, and hopefully make it a running list. This way you can add ideas/questions to it as you go along. Kudos to you for being so organized and proactive in your care; we truly are our best advocates!
In terms of which forum to post your topic on questions to ask the doctor, maybe post it in the forum called Upcoming Medical Appointments: Q&As. What do you think?
Regarding the specialist in Boston, it probably isn’t a bad idea. Wherever you can find a centre of excellence, or teams trained in ILDs/IPF specifically, is a good idea to get on their radar. Hang in there and keep us posted on how you’re doing.
Kind regards,
Charlene. -
Congratulations on the approval! It can be a nerve racking process all by itself! I started Ofev two months ago and have been religious about timing doses exactly 12 hrs apart with food and water. Breakfast at 8 is fine when retired as I am but I typically finish dinner by 7 pm and then have my second dose with a banana. On occasion, I have skipped food (dinner at 7:30 for example) with no ill effect. Apart for a few bouts of diarrhea, and an few bloody noses, there have been no ill effects to date. Good luck John.
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Thanks for sharing this experience with us Joe! I am sure many will benefit from hearing how you’ve managed Ofev with minimal effects. I’ve recently noticed an increase in nosebleeds, but I never thought it might be attributed to the medication. Do you suspect this is your experience; that it is linked to Ofev? Curious to hear! Thanks for sharing 🙂
Charlene. -
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Hello all,
I just recently joined to be able to post to forums although I have been a member of this group for quite some time.
I was diagnosed with IPF in May 2015, and have been on Ofev since July of that year. I did experience the diarrhea and nausea within the first 6 months. I occasionally have diarrhea but nothing that immodium can’t handle. I was told by my pharmacist and pulmonologist that taking a dose of immodium with each dose is perfectly fine, but I reccomend that you discuss this with your doctor. Ofev needs to be taken 10-12 hours apart with food. If you have problems with nausea, I would recommend eating peanut butter.
If anyone has any questions please ask. Thank you for allowing me to join this wonderful group!!
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I will be starting OFEV this week. Of course I am a bit anxious just thinking about all the potential side effects, but I want to get going on the drug so that I can get into a routine, know what foods work best, etc. My doctor is starting me out on the lowest dose possible, just 100 mg once a day, to make sure I tolerate it. Does anyone find that the breakfast dose is easier to tolerate, or maybe the dinnertime dose? Just curious. The Ofev nurse told me that I would need to eat a HUGE breakfast which I’m not sure I can do. From reading this forum, it sounds like many of you are fine with a banana, maybe some peanut butter?
Thank you. Any advice and suggestions will be most appreciated as I start on this journey!!
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Hello Libby, I found eating 5-6 small meals a day was sufficient for avoiding gastric problems. In the morning I would eat a banana with my bfast. Most of my meals consisted of a protein, starchy carb, and fruit/veggies. I think peanut butter would would also be good for avoiding gastric problems. I was trying to lose weight when I started Ofev. I do know when I would eat a big meal I had breathing discomfort. In the end your body will tell you what foods will be good to avoid gastro problems. Take care and keep us up to date on how you are doing. Mark
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Hi, Marianne. In answer to your remark about finding a way to afford your Ofev, I was advised to Google the drug name and “patient assistance” for programs that may be able to help with expenses. In addition to that, the company that makes your drug might have programs for which you qualify. I take Esbriet and have found help that makes that possible for me. I wish you luck because I think all of us will do just about anything it takes to try to keep the disease at bay for as long as possible. All the best. Karen Martin
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Hi John. My sleep schedule varies, but I usually have breakfast around 6 or 7 am, sometimes as late as 8 am. My usual breakfast has become a bowl of Cheerios with a cut-up banana and milk. Sometime I will have a piece of toast or a small donut afterward. I take my Ofev about 2/3 through my meals. Dinner is usually between 10-12 hours later. No ill affects. I agree that a couple small snacks during the day keep something in my system until a decent dinner. Often only two main meals a day with some snacks. I only take the Imodium if I have a loose movement, which is not frequent if I eat right.
On the cost of the Ofev, Open Doors helped me get this at no cost for about four months while I was waiting on my insurance to authorize it. Unfortunately, my insurance liked Esperiet better because it was cheaper. After about four months my side affects were so bad that they did approve the Ofev. Everything seems to be good now. I am lucky to have Tricare for Life as my medication coverage, so I only pay $28 a month for Ofev.
After I get three more tests in May I am hoping to be put on the transplant list in Louisville. We’ll see.
Hang in there and always be positive. Mike
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It is recommended to take OFEV with high protein food. For me, it is easy to eat half of a sandwich made from Hilshire Farms Deli Cut Chicken or Turkey lunch meat on white bread.
I took OFEV for 15 months, but unfortunately the diarrhea side affect just kept getting worse and I had to switch to Esbriet. I think the 150mg OFEV held my condition steady. I think my condition started slipping when I reduced to OFEV 100mg and still slipping on Esbriet. -
Hi Larry,
Thanks so much for writing to us, though so sorry to hear you don’t believe Esbriet is as effective as the 150mg Ofev. How are you tolerating it in terms of side effects? Thanks for tips on the high protein food with Ofev, I find this really important for my consumption of the drug too!
Take care,
Charlene. -
I am new to IPF and to this forum. Would like any advice on this issue – my pharmacy approved OFEV, however, the first month wiped out my drug benefit for the year. I worked with Open Doors, but you have to be near poverty level for them to approve you, I was just denied today. The annual cost of the drug is much more than we make in a year. I have two alternatives – we get divorced and I apply as a single woman on social security or wait for six months until I go on Medicare. I will, of course, talk to my doctor about holding off on starting the drug. But it just seems there needs to be another way. Again, would appreciate anyone’s thoughts on how to pay for this drug. Thank you.
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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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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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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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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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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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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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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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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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Thats a great achievement to get approved, and yes, its a bit of a challenge taking OFEV with food which is essential. For those of us over age 65 and on medicare, its $2,700 for January and then minimual $12 a month for the balance of the year — is that other people’s cost as well??
I find that fatty meats, or any fried foods, either pan friend or deep fried will aggravate my digestive system, ever since COVID eating home versus restaurant food has helped a great deal,,,,, but for the first year or so with OFEV I had quite a bit of gastro upset, requiring me to cut back on dosage and sometimes taking a break from the medication.. and then I discovered the benefits of taking pro-biotic 15 minutes before my meal and OFEV, I take Bio-K+ the non dairy rice based one seems to work the best on me…………and that’s after 1 full year of experimenting…….I was diagnosed 5 years ago, have been on OFEV for 3 years, and for past 2.5 years my PFT functions all leveled out with no decline, with the exception of the DLCO which continues to have a downward decline…….
wishing you and all the others similar success with OFEV!!
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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
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