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    • #18194
      Eleanore DAngelo

      Hi Charlene.  I’m finally getting Ofev.  I know you are taking Ofev and I just want to know how you are on it.  How do you feel?  I’m anxious to get started.  The person  at the breathers club in valley hospital who runs the meeting told me about stomach upset.  I can deal with that I think!!!!!  I’m the only one at that meeting who has pulmonary fibrosis.  I go to 2 meetings. I live between 2 hospitals so I go to both.  I would love to hear from you since you seem to be very knowledgeable about pulmonary fibrosis.  Thanks, Eleanore.

    • #18197

      Good Morning Eleanore,

      Thank you so much for getting in touch with me, I am happy to provide some insight on taking Ofev as you’re correct – this is the anti-fibrotic medication I am on for IPF. I am still on the dose of 150 mg twice daily, but do know a lot of people who have had to drop down to 100mg instead due to the GI side effects. Do you know which dose you’ll be starting with?

      I hadn’t joined the forums yet when I started Ofev, so I was “blissfully unaware” of all the side effects that could accompany taking this drug as I didn’t know anyone else at the time who was on it. Therefore, I didn’t have a lot of anxiety and just kind of started it and so far, so good. I follow ALL the instructions on the box and have started eating more small meals throughout the day, multiple times a day and it seems to help with any nausea (my co-moderator Mark suggested this). I also take a stomach coater ahead of taking my AM and PM dose, and ensure I have adequate protein in the meals I take the Ofev with. Not sure if this helps a bit? I also drink tons of water, and I’m not sure if this helps reduce my symptoms but other than periodic nausea and stomach cramping/diarrhea, I have tolerated the Ofev quite well. I am aware of people who suddenly develop an intolerance to the drug and either need to come off of it for a few weeks to reset their GI / stomach issues, or have to reduce the dose to 100 mg. Because of this awareness, I am always on the look out for any terrible symptoms but so far, I’ve tolerated it. Does this help?

      Goodluck with starting the drug. When do you anticipate starting it Eleanore? Here is a forum thread filled with information/tips on starting this medication or ways to make it a little easier: 

      Take care,

    • #19140
      A. Houghton

      There might be a possibility that this medication might be prescribed for my husband but, honestly, there is no way we can afford the cost of this medication.  With our insurance, the monthly cost would be over $2,600.

      I would so appreciate any information and/or suggestion as to how I could manage to lower the cost of this drug.

      Thank you,


      • #21213
        Patricia Williams

        Charlene, I just read a post of yours about taking a stomach coaster before you take your Ofev. I have also having issues and would like to hear more about this stomach coater Thanks

    • #19150

      Hi Catherine,

      Thanks so much for writing this thread, and asking for suggestions from others on how they manage the cost of the medication. I know it’s never easy asking others about how they do this! I am hopeful that someone who is based in the US can contribute (or multiple people) and share how they work around the cost of this medication. The rules are very different here in Canada, as most of it is covered by our provincial health plans. I pay very little for my Ofev dose. One question I have: does Arthur have a social worker assigned to him/his needs through the hospital or local treatment centre? If so, I’d suggest starting with him/her to see what resources might be available to help off-set those costs. $2600 / month is atrocious and I can’t imagine anyone being able to afford that! Does anyone else in the US have additional insights to offer Catherine? If so please share!

    • #19163
      George A Rydberg

      I have been taking Ofev for over 3 years. I have not had to pay anything. My insurance pays after my co-pay. Open Doors finds help with the co-pay. I don’t know anyone personally who has not been helped by Open Doors with the co-pay. My doctor set it up when he first diagnosed me with IPF. Don’t delay starting Ofev as it works.

      • #19171
        Mark Koziol

        Hello George, thank you for your suggestion and for telling us about your experience. Mark

      • #19172

        I need to check out Open Doors because my insurance copay is $1000.00 per month and that is supposedly with help from the manufacturer.

        • #19173
          Mark Koziol

          Hello Jeannie, when I started taking OFEV, Boehringer Ingelheim called me and told me they are going to give me $20,000. The monies was for whatever my insurance did not pick. Fortunately my insurance picked up everything except my $10 co-pay. You might want to call them and see if there is any thing like available.


        • #19176

          Thanks I will try that because I cannot afford this medication with my copay.

    • #19182
      Jacki Baum

      Good morning, I live in SC and have been on OFEV for over a year now, started off on 150 twice daily and then my Drs lowered my dosage to 100 twice daily due to side effects.  I got assistance with the cost of the drug through Open Doors, they put me in touch with two foundations that give grants to folks who need assistance with drug costs.  Mt drug plan pays $8,645.00 a month and the grant I received pays the rest, so I pay nothing for the drug.  To apply I just had to give them my monthly income to see if I qualified.  You can make too much monthly to qualify.  I definitely would contact Open Doors

      • #19186
        Mark Koziol

        Hello Jacki, thank you for the information you provided. Thank you also for sharing your experience. Best wishes, Mark

    • #19691

      Hi all –

      So far all the foundations I have contacted to help to cover the cost of OFEV have turned me down.  My doctor is going to see if he want get the price lowered for me.  I am on Medicare A & B, Supplemental Policy and Part D Drug Coverage plans.  I found out today from my insurance broker that if I change my Part D Drug Coverage plan and can bring the cost down considerable.  It is still quite high for a few months but then drops to a much more reasonable cost.  Even though I am retirement age, I am still working full time and that is part of the problem.  Different insurance companies apparently pay different amounts for the drug.  So check around.  My insurance broker in Ohio does not charge me anything to research the various Medicare plans and figure out which one is the best one for me.  A good broker will ask you what medicines you  take, the dosages and how often you take them.  Then they will shop the market and find the plan that is the best for you.  This is the same broker I worked with 2 years ago when I went on Medicare.  He can also save me $ if I change my supplemental plan – plus my doctors and preferred hospitals are all in network.  So if you are in the US please look at this as an option.   Just a note what works for one person is usually different for another person.  It all depends on which medicine you need.  Just because a plan is good for a friend or spouse does not mean it will work for you.  Keep at it.  Good luck.


    • #19707
      Mark Koziol

      Hello Marianne, I am glad you are up on top of the medical scenario you are dealing with. It appears everything is going to work out for you. It is too bad you have to jump through all these hoops. Keep at it. Take care.  Mark

    • #21252


      Hi Patricia – sure, I’ll check out the name of it tonight when I get home and message it to you! It is a generalized stomach coater medication, but has to be prescribed. So it isn’t specifically for Ofev but I find it is beneficial. I’ll get the name to you tonight, and if I forget (lots on my mind right now) feel fee to remind me 🙂


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