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Starting Ofev
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Thank you for the well wishes Charlene. I’m hoping for the best too.
Tony mentioned .25 cents in India! Just a short note on that. My doctor at Yale said she purchased ofev from India for her father. But to be safe she had the pills analyzed at Yale. They were the same, but the dosage had to be adjusted. Evidently the med was the same but the units were not. How much difference does it make? A guess a pharmacologist would know.
Thom
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Hi Thom,
Wow – how interesting is that! I’m glad to hear that the pills were the same after being analyzed at Yale, I would be a bit skeptical about this difference (although, when patients have no other options financially to get the drug, I can certainly understand why this option would be appealing) myself I think, so this is really good information to know. The dose could be adjusted easily enough I suppose! Thanks for sharing this, its really interesting to know and will potentially be really helpful for others as well.
Take good care,
Charlene.
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Hi Charlene:
This is a test to see if my post posts…LOL
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It passed the test @bobb, I got your post successfully 🙂
Hope you’re doing well!
Charlene.
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The stated full cost of Ofev in Australia while still ridiculously expensive is vastly different from what I’ve seen, ie. US$ 2400 per month. I pay AU$6/month as a vet, normal price $35 or so.
Charlene perhaps we could have a guide on what to eat (and what to avoid) while on Ofev, I’ve already sworn off sourdough grain and all heavy breads. I now resort to what we called “bad bread” you know the white prepacked sliced stuff. Jan & I have been on high fibre diets for the last 30 years and Ofev people advise against a major part of my diet. I’m also not eating as much, I no longer desire large meals.
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Good morning @mal-com,
Thanks so much for getting back to me and I hope this note finds you doing well!
It is interesting how the prices differ for such a needed drug in the IPF world, isn’t it? Here in Canada, we don’t pay what the US does either due to our government healthcare coverage, but still have a fee. It is more reflective of what you seem to pay in AU (without the vet fee, of course). I am so thankful for this as I know some people find the costs of their medications truly prohibitive to their survival. While it isn’t a drug, right now a big piece of news in Canada is that people aren’t able to afford re-locating to Toronto for lung transplantation as this is the best centre in Canada to do lung transplantations (and one of the only ones). I read this article last week, and it broke my heart that some people are choosing to die instead of fundraise for the cost of moving provinces to Toronto… https://www.cbc.ca/radio/thecurrent/the-current-for-march-13-2019-1.5053541/doctor-forced-to-tell-lung-transplant-patients-to-fundraise-to-pay-for-life-saving-treatment-1.5053548
It sure would be interesting to compile a guide on what to eat or avoid while on Ofev! This could be a project I’d be curious in starting a bit down the road, as I am working right now on creating a forum for folks to compile their laser therapy results. Trying to balance a bit of work-life tasks at the moment but let’s revisit this in a few weeks and I’d be happy to help! Would that be okay?
I typically stay away from bread myself Mal. I actually can’t remember the last time I had any bread – I usually make “mug bread” (very low carb, 90 seconds in the microwave and only 4 ingredients – egg, almond flour, butter and baking powder) if I feel the need to have something like that. I really find it helps my stomach since starting Ofev, and I have had to start a fibre supplement since Ofev actually – which is in opposition of most folks I find. I also don’t eat a lot anymore, just generally not very hungry. I do have a lot of smoothies though – do you have many of these?
Talk to you soon,
Charlene.
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After almost 2 weeks on ofev with zero symptoms, all hell broke loose yesterday. I skipped it today because I’m still at it, will try again tomorrow hopefully it takes a turn for the best. Thom
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Oh no, I am so sorry to hear this Thom! The side effects can happen very quickly and be very unpleasant. I hope stopping it even for 12-24 hours has helped to “reset” your symptoms. I know others have had to do this. I’ll keep my fingers crossed that this works for you too! Take care, Charlene.
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Hi Malcolm,
Cost of Ofev in Aust is $40.20.
Regarding your diet, I was part of a Named Patient Program because Ofev hadn’t been approved in Australia when I started on it. The drug company produced a booklet with helpful guidelines. The most important was a LOW fibre diet and try for 6 smaller meals each day. I started on this but have now gone back to my normal eating plan and foods in moderation. I really think it’s a bit of “trial and error” until you find what suits you. We are all different in our eating habits and foods so what works for one does not necessarily work for another.
There’s also things like pineapple which is a high fibre food but excellent at breaking up mucus. I love pineapple so I choose to eat it even though it’s not on the approved list.
Good luck, Debbi
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Hi Thom your experience mirrors mine, I’m now trying to work out the safest diet. Mine is not debilitating & hasn’t got any worse, just there most of the time. I thought the Imodium packet that came with my Ofev instructions was a bad omen.
Debbie, if I could get sweet pineapples here they’d be on my list too, we lived in Qld for a while & I miss them. We had 5 big mango trees, I really miss them.
CheersMal
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Hi Mal,
Mareeba Gold pineapples are the best hahaha. Not a big fan of mango though.
Deb
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Hi Debbi actually we’re up in Canberra looking after some grand kids this weekend and saw some decent looking pineapples at Fyshwick Market, I’ll get a couple before we go home.
I have a rough pineapple top growing at home, but it hasn’t produced anything yet.
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I remember eating pineapples in Australia while travelling around @mal-com and @debbi! They were delicious, so very fresh … it might have also had something to do with the fact that while I was in Aus, my family and friends were dealing with -22 degree weather at home in the Canadian winters. This knowledge simply may have made them taste better haha! I am looking very forward to fresh pineapples while visiting Hawaii this year too. They are one of my favourite fruits!
Hope you’re both enjoying your weekend 🙂
Cheers,
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Charlene and Mark –
Got the approval today to start on OFEV. The cost is quite high on my insurance. I have Medicare Part A, Part B, a Supplemental Policy plus Part D for drug coverage. Because I am still working full time even though I am retirement age it appears that most programs out there will not help with my cost for this medicine. I am calling my pulmonary doctor tomorrow to see if they know of any ways to lower my cost. I do not qualify for many of the programs to help with the cost as I make more money than the poverty level in the US. It appears that the manufacturer only helps with the cost if I have no insurance, under the poverty level or have private insurance (not Medicare). My pulmonary doctor told me that his office had the knowledge to help lower the cost. The doctor talked to me about both medicines available and I told him I wanted to try OFEV instead of Esbreit – mainly because of the super sensitivity to the sun that is a side effect of taking Esbreit. I cannot afford a couple thousand $ per month to take this drug. Might have to retire to lower the cost. Not sure what I am going to do yet.
Did anyone else here experience high costs to take OFEV/
Charlene – I know you are in Canada which is a whole different approach than in the states for doctors and medicine.
Mark – did you have private insurance when you first went on OFEV?
Thanks for all replies.
Marianne
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Hello Marianne, sorry to hear about the insurance situation. Maybe one of other forum members can chime in and offer suggestions on other supplemental programs to pay for the Ofev. I did have private insurance, however i worked for a school district and they covered everything except the $10 co-pay. This was then covered by a program Boehinger Ingelheim initiated. There was $20,000 available if I needed it for supplemental coverage. They paid the $10 co-pay each month. I know there are some programs out there and hopefully your doctor is privy to them. I do know several of our members receive their Ofev from India at a very low price. Mark
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Mark –
Thanks for your reply. I am calling the doctor when they open today. Also going back to my insurance company today to see if they have any programs. Perhaps insurance company can tell me what my cost would be the following month. The Specialty Pharmacy said they cannot figure that out until I pay the first month which is $2,324. If I am figuring the cost correctly by what they told me – the second month coverage would also be quite large then it looks like $500-600 month for the remainder of this year. If I cannot get that cost lowered I may be forced to retire to get my costs lower. Thanks for your input. I did hear from another member and they suggested I start with calling my doctor’s office. They were able to lower there cost that way. They are also located in Canada.
Marianne
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Has anyone on these forums refused the 2 drugs approved for IPF because of the cost of the drugs? If so, has anyone used any other drugs instead of the approved drugs – Ofev or Esbreit? What other treatment options has anyone tried? Thanks for any thoughts you can provide me. If I can not get the costs down for Ofev I am seriously considering not taking the drug. Did anyone start either Ofev or Esbreit and stop it because they did not think it was helping them? My pulmonary said it helps slow the disease down about 50% of the time. Lots of questions and lots of decisions to make.
Marianne
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Hi @marianne,
I am writing this reply on behalf of Bob B. who tried to reply himself but the forums were giving him a hassle. Here is what he wrote to you/us verbatim:
Marianne I assume you are in the United States or another jurisdiction that doesn’t have universal health care. Charlene and I are in Canada and although we have to qualify (our condition has to meet the test of being mild to moderate) for OFEV, once we do so then it is provided free. Like Charlene i’m not aware specifically of anyone who has refused either medication due to cost but i’m sure there has to be some people. I disagree with the comment from your lung doctor as I doubt our government would approve this medication if it on;y worked on 50% of patients. My specialist advises me that OFEV is shown to slow down progression by two thirds. that;s a far cry from only working 50% of the time.
There have been recent posts on this forum about being able to order and import OFEV from India. Neither Charlene or I have detailed information but if it works, the cost is something like $225 A YEAR! I’m sure Charlene can point you in the direction of the forum member who suggested this. Apparently it is legal to import and the medication is exactly the same but it is marketed in India under its clinical name of Nintedanib. In the interim you should be able to call on your lung specialist to secure a start-up supply, they get samples all the time.
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Hi @marianne,
I haven’t heard of folks declining the drug due to it being cost prohibitive, although I certainly could see that happening for some folks. They’re so expensive! For people who are on Esbriet, I’ve heard stories of the maker of the drug (Genetch) giving “trials” to patients but ongoingly so they are never without it. I haven’t heard of this happening for people with Ofev though, although there may be a way to navigate the cost. Does anyone else know? I have heard of folks declining the drug due to the side effects and the quality of life that is compromised as a result. I’d be curious to hear from others on this topic as well, thanks for bringing it up Marianne.
Regards,
Charlene.-
Hi Marianne,
I have not refused because of the cost but for the side effects. There is a pirfenidone supplier in India and their cost is very low. I can send you the link I saved if you wish, however, I know nothing about them yet they seem to have a good rating.
I do take supplements and enzymes that help and there are several different forums here that can help you understand uses better. It takes a while to understand these things and I enjoy additional research even after starting something as there are ongoing new useful insights.
Briefly, I do/take: Hot lemon water in the morning two big glasses and wait 20 minutes before eating/drinking anything else, sometimes I include crushed garlic. Diet, water, and exercise – oddly my O2 stays slightly elevated for a couple of days after mild to moderate exercise at the gym. Daily: astragalus, serrapeptase, nattokinase, D3 and K2m7, a good B vitamin complex, Ubiquinol (q10 superior form many claim), alpha lipoic acid time release, omega 3, niacin time release. Some of these are to help with PAH, some I have been taking a long time. Finally, use a class 4 laser when I am stateside (can’t find one in the Philippines) and I recently started Wei laboratories herbs (expensive but short term) because of no laser.
Others are looking at other herbal combinations and one that shows promise is Rosavin, it has several names and I think different combinations.
That’s a lot so please ask or PM me if you want.
Steve
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Hi all –
Today has been a busy day. Spent part of the day on the phone reaching out to various foundations for help on the co-pay and cost of OFEV. Basicially, I was told I did not qualify for assistance. I called my doctor’s office and left a message. It wasn’t long before the doctor himself was calling me back. He asked if I had spoken with the manufacturer. I told him I had called them and was turned down. I told my doctor that I could not afford to pay the price my insurance quoted me. He told me he would reach out to a contact he had at the manufacturer and see if they would accept me into the program. He also told me he was going to see if I had a lower copay on Esbreit. For now we are in a holding pattern. He definitely wants me to participate in a trial this summer. That’s all I have right now.
Hope everyone is having a good day.
Marianne
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Hello Marianne, let’s keep our fingers crossed your doctors connection can come through for you. I honestly do not know what the process is for these drug manufacturers. When I received the monies they were not going by income. I think they arbitrarily gave me the monies because the drug was recently approved. I know my doctor had to complete extensive paperwork for my insurance to pay. I only had a $10 co pay. I am sorry you have to go through this adversity.
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Hi Charlene, Mark, John L. and everyone –
I am starting Ofev this weekend. The medication will be delivered tomorrow. I found no help at all on the cost of the medicine but decided to take my Social Security while still working. I will use that to help pay for the cost of the medicine. Seriously thinking of retiring by the end of the year. Then I should qualify for some financial help with the cost of the medicine. Also, my first grandchild is due in January 2020.
Hope everyone has a great weekend.
Marianne
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Hello Marianne, first of all congrats on you expecting your first grandchild. Very good news to hear. Please keep us updated on how you are adapting to the Ovef. I hope for the best. Remember, because others have had problems doesn’t mean you will. Keep in touch, Mark.
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Goodluck Marianne!
Keep us posted and take good care 🙂
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I started two weeks ago and side effects have been minimal. A little nauseous for a few days but no vomiting or diarrhea.
My doctor said the efficacy rates of Ofev and Esbriet are the same. It was my choice so I went with Ofev because it doesn’t have the sun exposure issues and it’s just two pills a day.
My team of doctors includes a rheumatologist who believes I might have autoimmune issues. My pulmonologist, who specializes in ILD, thinks the CT scan is much more indicative of IPF. In choosing a treatment he said that if we go with Ofev or Esbriet there’s some evidence it will also help if my fibrosis is in fact autoimmune related. But if he uses the drugs normally used to treat autoimmune diseases, it could actually hurt me if it’s IPF. There are some clinical trials going on now that suggest Ofev coupled with Cellcept have been really effective for those who are autoimmune, so it might not be long before Ofev is approved for diseases other than IPF.
I happened to come across this article recently which really gives me hope that Ofev will extend my life. They estimate the mean survival rate of those taking Ofev could be 11 years. That would be fantastic for those of us who are diagnosed in our 70s or 80s.
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Hello Cynthia, thank you for the update and providing the link to the research article. Mark
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I’ve been on ofev for several months now.. I had no reaction for the first two weeks than all hell broke loose. I was told to stop for a while. My dr suggested 100 mg instead of the 150. For about 2 weeks I was vomiting and diarrhea. It slowed down, but stomach problems. Dr increased omeprazole to 40 mg. It helped but not a lot.
Thank you Charlene! She suggested I take 1/2 tablet of imodium with ofev. Since than no problem. I wake up, eat banana, take med. Hour later breakfast and I’m good to go. And I dont mean to bathroom. Thanks Charlene
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Hi Thom,
Thanks for writing – it is so nice to hear some positives around Ofev, as I know many folks have difficulty with it and can feel as though it is unmanageable. In some cases I suppose it is, and by no means do I mean to negate the difficulty you had with it after a couple of weeks, it is just nice to hear you’re managing with the medication a bit better 🙂 So glad for you! Important to note for folks reading this: it is the sublingual immodium tablet that I’ve found most effective. Thanks again for sharing Thom and really glad this option has helped.
Enjoy your weekend!
Charlene. -
@marianne please email me.
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Hello Charlene, this is Jaime, the one is having lots of problems with the excess of phlegm, almost unbearable, still quite heavy, but the reason Im writing is to thank everybody in this forum ,specially you for caring so much, wanted to give you some of my experience with OFEV. I was diagnosed IPF back 1n 2012, but it didn´t bother me until fall 2017, after a long 3 months brochitis, then I went to see dr, he give me the choice of both medications that you mentioned time ago, Started on OFEV because was the newest in de authorized market. After 2 months of traetment a gave up couse terrible side effects, among them , Diarrhea, headaches, muscles pain, dry mouth..etc. Now I´m not taking any antifibrotic, but as per Dr. advice I,m taking Atorvastatins, 1 a day and 2 Metformine, so far so good, not oxigen yet , but close to, beacouse I cough too much after a small effort.
best regards to all of you
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Hi Jaime,
Thanks for writing and letting us know how you’re doing, although I wish it was a bit better news regarding the excess phlegm. Have you found anything that helps alleviate it at all? I’m so glad you feel supported in this forum, it is filled with lots of wonderful people who truly do care and I’m happy you’ve found us.
Thanks for sharing your experience with Ofev as well. I agree with you regarding the nasty side effects, can be so difficult to manage but I am holding out hope that some members are finding them manageable. I am on Ofev as well and doing okay so far, hoping this continues. Is your Metformin prescription new? There has been a lot of discussion around this but just recently a study was released on the benefit of Metform for IPF in particular so I’m curious about physicians exploring this. I hope the two drugs continue to work! Will be thinking of you Jaime, thanks for writing to us.
Charlene.
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@jaimeluciano
Jaime – Happy to discuss serrapeptase with you. It has knocked out almost all phlegm. – Steve
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hello Charlene, no luck with my Phlegm business, during the day isn´t that bad, when the bedtime comes is my problem, made me cough a lot, but will tell you about Statins and metformin….My pulmunologist prescribes me the Astorbastatin, he said work pretty good on inflamation of the respiratory tracks also.(cholesterol medication) Metformin I take since a while for my pre-Diabetes. Some of these drugs is doing good to me. Not 100% but doing something…plus a couple of kiwis every day, lots of fresh garlic, red onions..on my every day diet. Im pretty alert on the new stuff on tests we could benefit from.
Best regards for you Charlene, and the rest of our wanderful team of writers, God Bless you all
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Hi Jaime,
Thanks for your reply, although sorry to hear you haven’t had much success in reducing the phlegm. What a pain, especially during bed time when our bodies need good quality sleep from the exhaustion of this disease! Thanks so much for sharing about the medications, I am going to keep an eye/ear out for mention of both of these as I have heard quite a bit about Metformin and IPF in particular lately. Glad you’re staying alert to new options that may help our situation with IPF, this is really important for the ability to advocate for our healthcare needs. Kudos to you! Keep in touch and wishing you all the best.
Charlene.
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Hello,
I am starting OFEV tonight. I was diagnosed about two months ago with moderate IPF and after blood tests, breathing tests, and a lot of paperwork my prescription arrived today.
I have read a lot about side affects and diet on the forums, so I am going to be really careful with what I eat and all. I am still working full time as a military electronics instructor so I would hope I will not have diarrhea of too much nausea when I am teaching tomorrow.
Since I am new as far as this disease goes I don’t have much to post yet. I am open to advice and will share any experiences I have. Have a great evening everyone.
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Hello Andrew, I hope your first evening on OFEV went well. With my experience I chose to eat 5-6 small meals per day partly because I also had to lose weight to be eligible for a transplant. I made sure I had a protein in my belly and also a carb. You will find your comfort zone. Best wishes and thank you for your service. Mark
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Hi @andrew-hicks, I am posting this on behalf of another forum member (Bob – @bobb ) to your question about Ofev. He is having a hard time accessing the forums, but here is his reply verbatim: “Hi Andrew: Like you I was more than a bit concerned about the side effects of OFEV but I have been on it for over a year now at the 150mg dosage and the only side effect I have is MILD diarrhea. You are going to get varying opinions on here and mine will differ from Mark’s. My approach to this medication is not to let it, or the IPF for that matter, control my life. I have not varied my diet in any way since I started using it except for my evening pill which I take about 9pm (outside of mealtime) when I usually make sure I have a bit of food in my stomach. In my case I eat half of a large muffin and a cookie. As far as the diarrhea in concerned, as long as it remains mild ( say 2 or max 3 movements a day) I really do nothing. You can try Imodium but it doesn’t work for me. With my lung specialist’s agreement, if the diarrhea get worse, I come off OFEV for several days to let my bowel settle down.
Hope this helps and go luck going forward.
PS I’m in Canda. I don’t know where you are but thank you for your service”
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