This topic contains 20 replies, has 9 voices, and was last updated by  Mark Koziol 3 months, 3 weeks ago.

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  • #19189
     John L 
    Participant

    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

  • #19192
     Charlene Marshall 
    Keymaster

    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.

  • #19193
     Mark Koziol 
    Keymaster

    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.

  • #19194
     John L 
    Participant

    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…..

    • #19195
       Mark Koziol 
      Keymaster

      Hey John, thank you. You will get through this. Please don’t be intimidated by the Ofev. Keep us up to date. Mark

  • #19203
     Marianne 
    Participant

    Congrats John on getting insurance approval for Ofev.  I don’t have any advice for you as I am not taking any meds at the present time.  Hope you have an easy time adjusting to it.

    Marianne

  • #19206
     John L 
    Participant

    Thank you Marianne…..

  • #19231
     Cynthia 
    Participant

    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?

    • #19236
       Peter Goodwin 
      Participant

      Hi Cynthia

       

      RA was also the source of my PF, which was diagnosed as UIP (usual interstitial pneumonia.)

      Ofev and Esbriet are only tested for use by IPF patients, so are not available to us.

      For what it’s worth I have taken a course of Laser therapy, which may prove more effective over time.

  • #19232
     Charlene Marshall 
    Keymaster

    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.

    • #19235
       Mark Koziol 
      Keymaster

      Hello Charlene and Cynthia, Charlene I believe you are correct. Ofev is only for patients who have ipf. I have found nothing as of yet to refute this.

    • #19248
       Cynthia 
      Participant

      Thanks, Peter. I’ll be sure to inquire about laser therapy.

  • #19244
     Suzanne R Brennan 
    Participant

    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.

    • #19247
       Cynthia 
      Participant

      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.

  • #19259
     Charlene Marshall 
    Keymaster

    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.

  • #19282
     Joe Murray 
    Participant

    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.

  • #19284
     Charlene Marshall 
    Keymaster

    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.

  • #19526
     Marianne 
    Participant

    Just got approved for Ofev but have not started it yet as the cost is very expensive under my plan.  I am going to call pulmonary doctor tomorrow to see if there is some way we can get the cost lower.  Not taking drug until determine if I can get it for a lower cost.

    Marianne

  • #19532
     John L 
    Participant

    Good luck Marianne…Hope they can help find a way to get you the Ofev….

  • #19548
     Karen 
    Participant

    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!!

    • #19556
       Mark Koziol 
      Keymaster

      Hello Karen, thank you for joining. It makes Charlene and I happy when forum members become active. Thank you for relating your OFEV experience to the rest of the members. Everyone’s experience can always help others. Take care. Mark

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