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    • #16103
      Keith Nelson
      Participant

      January 4, diagnosed with interstitial pulmonary fibrosis. We have two more tests to go, to be completed yet this month. My Dr., through his Nurse Practitioner has recommended that I get started on Ofev. My 89 year old aunt is taking Ofev and has experience every bad side affect of the drug. I am 67, in otherwise excellent health – other than the IPF an related GERD that seems to be a given with IPF.

      My lung function test returned a value of 29% for my alveoli effectiveness, which indicates advanced IPF, according to the Dr.

      Would you be so kind as to share your experience/s with Ofev?

      Thank you very much

    • #16114

      Hi Keith,

      Thanks so much for writing to us, and starting this thread. Welcome again to the forums!

      Sorry to hear of your Jan 4 diagnosis, did they say a potential cause of the PF or is yours considered idiopathic as well? Mine is IPF and I was diagnosed nearly three years ago in April 2016. I am on Ofev and thankfully (*knock on wood*) really haven’t had many side effects, although I know many who have unfortunately. There is another thread on this forum, you can read here, that is filled with lots of information on Ofev and different experiences people have had. 🙂

      Goodluck with the remaining tests you have to complete in the next couple of weeks and let us know how you make out with starting the Ofev, if you do choose to pursue it. We’re all here for you!

      Charlene.

    • #16115
      Keith Nelson
      Participant

      Hello Charlene,

      I misspoke in my first attempt here, it is idiopathic pulmonary fibrosis that has been diagnosed. We have two more Dr. visits this month in an attempt to ferret out the “cause” – which I believe to be a not-optimal functioning Upper Esophageal Sphincter – combined with diagnosed (but not consciously perceived by me) Gastroesophageal Reflux Disease – leaking fluid into my lungs on occasion.

      Thank you for sharing your Ofev personal experience.

      Keith

      • #16144

        Hi Keith,

        Thanks so much for getting back to me and clarifying. Have you anymore doctor’s appointments since we last “spoke”, in an effort to find out more answers? I hope you’re feeling comfortable with your pulmonologist, that is one of the most important things in my IPF treatment I found. I am very lucky and really like my doctor, he is great so far. Feel free to write anytime about the GERD and IPF, there have been a lot of recent discussions on this forum about that, and some really great information shared by patients who experience both.

        Goodluck at your appointments. Do you have a date to start the Ofev yet, or do you need to wait for the last two appointments?

        Charlene.

        • #16164
          Keith Nelson
          Participant

          Thanks Charlene,

          I met with the Rheumatologist on Wednesday, he is having his lab do some analysis on my blood to see other bodily effects of PF.

          On Monday I have the barium swallow test. There is a problem with the upper esophageal sphincter that we are hoping to uncover through that test. With interstitial pneumonia water is present in my lungs, so we suspect this might be the culprit.

          Once the Rheumatologist’s labs come back, likely on Wednesday, and the results of the barium swallow are in, my prognosis will include me becoming intimate with Ofev. I predict it will be sometime before the end of the month.

          As ominous as our future is with PF, it seems much more ominous without the benefits of Ofev.

          Again, thank you, Charlene

          Keith

    • #16121
      Jacki Baum
      Participant

      Good morning, I have not been on this site for a while.  I had a new OFEV issue on Sunday. I experienced a constant pain in my stomach around 11:00 am and it got progressively worse as the day wore on, until the pain got so intense I contemplated going to the ER.  I took antacids that did not seem to work.  We did not go to the ER, it was getting late in the day and my husband cannot drive at night.  So some reason, I felt the need to walk, so I walked around the house for about 15 minutes and the pain gradually went away.  My Pulmonologist has taken me off OFEV till I can be seen by my Gastrointestinal Dr to see what is going on.  I was told one side effect is abdominal pain and a perforated stomach, so I guess I need to get it checked out.  I take 200 mg a day and have all the side effects but none really severe.  I also have reflux, but very mild and is controlled by medication and diet.  Has anyone else experienced this side effect?  I have been on OFEV since 2017, started with 300, then reduced to 200.

      Hugs,

      Jacki Baum

       

      • #16145

        Hi Jacki,

        Thanks for writing and it is so nice to hear from you – I’d been wondering how you were doing 🙂

        So sorry to hear about this recent difficulty with Ofev, that must have been so frustrating for you! Did you notice that pain arrived after taking the Ofev, or do you believe it is linked to the medication? I do know of some people who seemed to develop an allergy/intolerance for the drug at random but don’t recall if their side effects matched yours (my memory seems terrible these days), but it makes sense if the doctor says that is one of the side effects of Ofev. Thank you for making me aware of this, as I am also on Ofev. I’m glad you’ve been taking off the drug until they can find out the cause of your abdominal discomfort, do you know when that appointment will be? I am on a lower dose of Ofev 150mg, but I know lots of people who have been reduced to the 100mg to try and tolerate it better.

        Hang in there and let us know how you’re doing.
        Hugs,
        Charlene.

    • #16159
      Jacki Baum
      Participant

      Well I saw my Gastroenterologist yesterday and all is good, no bleeding in my stomach or intestines so I am back on OFEV.  They have no idea what happened, could be one of 50 things, but I am just relieved things are normal, or at least my new normal!   Been doing well, New Years Resolution was to walk at least 2 miles at least 3 times a week, and so far have been meeting my goal.  I feel I have to push myself and keep my lungs working.  Go to see my Pulmonary Drs first week in February and am hoping for no change, will let y’all know what happens.

      Everyone please stay safe and for you in the cold North, stay warm!

      Hugs,

      Jacki

      • #16163
        Keith Nelson
        Participant

        Whew, happy to hear it was nothing serious!

         

        Keith

      • #16167

        Hi Jacki,

        Great to hear back from you, especially with this good news! I am happy it isn’t something really serious, and hopefully going forward the Ofev will be a bit more tolerable for you/less problematic. They didn’t adjust your dose or anything? Good for you for maintaining your new years resolution – I know that isn’t easy, but so important for us to keep our lungs working. Do you want inside on a treadmill? As soon as I get a new pulse ox (mine broke, and I feel more comfortable having one on while exercising) I’m going to get back to doing this too.

        Take care, and please keep us posting on your upcoming appointment. I hope it goes well!

        It’s pretty cold here, that is for sure…. -34 celsius this morning, so I am hibernating inside this weekend 🙂
        Cheers,
        Charlene.

    • #16162
      Keith Nelson
      Participant

      Yesterday, I surmised I have had my head in the sand about long enough, time to check out my future. Went to the local Walgreens, thought I’d ask: what is the cost for a 30 day supply of Ofev (the drug my Pulmonologist is recommending)? The Walgreen’s pharmacy clerk could not have been nicer. She gasped at the screen, stated that she would have to ask the Pharmacist if she had looked up the correct drug. “Yes” was the response, she then looked me in the eyes, “I’m sorry, it will be a little over $11,000 @ month” She was taken aback, I was not. I knew my Aunt said it was a little over $9,600 for her. I sat in the reception area, got out my iPhone, called the FEP Blue (Federal Employee edition of Blue Cross Blue Shield). After being connected at a few different levels, I finally reached the “special pharmaceuticals” section. Yes they have the drug available, with my FEPB benefits, standard option, my copay $50. Jumping Jos’e $50! AND there is a program, for which one applies, that lowers my copay to $-0- if I qualify! I am not sure I will even apply. As I experience and read this – this is where my life path has taken me – whew! (at least I am still vertical on the path, know the path I’m on, have no symptoms on a perceptible basis at rest, and a smile on my face)

       

      Additionally I have started a private group on Facebook “Pulmonary Fibrosis”. If you happen to be a Facebook user and want to join let me know, I can invite you in. I have several groups I manage on Facebook, this was just a natural addition to the field.

       

      • This reply was modified 2 years, 6 months ago by Charlene Marshall. Reason: formatting
    • #16169

      Hi Keith,

      Thanks so much for sharing this story with us, I am happy it had a positive ending for you! I can only imagine what was running through the poor mind of the Pharmacy clerk who had to deliver the news of the cost of Ofev to you. Imagine how she would feel if she knew someone didn’t have insurance? That would be so tough, I couldn’t imagine.

      I am so glad you called the FEPB in the moment to find out your copay is $50 – what excellent news! Did you end up telling the clerk that? I bet she thought of you for awhile after that, hoping/praying that you had an insurance solution to that cost. My Mom is a Pharmacist, and she says it breaks her heart when she knows someone doesn’t have insurance, but they’re dependent on the drug they need that is expensive. It bothers her, and she thinks about the person a lot. Really happy this worked out for you, and thanks again for sharing – a good reminder to ensure we utilize all of our resources when it comes to the cost of drugs for this disease! 🙂

      Take care and I hope you’re having a nice weekend!
      Charlene.

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