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    • #28254
      Bob P
      Participant

      Has anyone tried taking one 150 MG and one 100 MG dose of Ofev per day? I have been taking to 150 MG doses a day but have had G.I. side effects, mostly in the evening. My pulmonologist ordered a reduced dosage to 100 MG but I have a few weeks of 150 MG doses left. I was going to try taking one 150 MG dose in the morning and one 100 MG dose in the evening to see if that helps.

       

      If anyone has tried this, how has it worked out?

       

      thank you

      I asked my pulmonologist if it is possible to split doses and her response was the FDA only recommends to 150 MG doses or to 100 MG doses per day.

    • #28283
      Rene Hakkenberg
      Participant

      Hi Bob, first of all I am not a doctor. I have been on Ofev off and on for over 3 years I tried many combinations of dosages. At times I had to completely stop taking it to give my stomach a rest. I am now on 2×100 mg daily and it appears that I can tolerate it. I think that there is nothing wrong with taking one 150 and one 100 mg. I just never had the 150 but if I did I would try it like you suggest, one 150 and one 100 and see how you tolerate it.

    • #28291

      I Take 150 mg every 12 hours and I hate the constant diarrhea and weakness, but i do breath better so I do it…I am meeting with the transplant team this Friday so will see how that goes..

    • #28330
      Donald Salzberg MD
      Participant

      Hi Bob

      I am a physician but I am careful to “give medical advice here.”  I’m on OFEV 150mg twice a day. I am a huge fan of Zofran if you suffer from nausea (typically hits 2-3 hours after taking the meds)!  I take OFEV after I’ve eaten something. I have tracked my diet (you’d all cringe) and there’s no real correlation. Diarrhea can be bad for a few days and then is gone. I have purposely not taken the second dose when I’m suffering with GI issues but I’m not suggesting you do that. I’ve done that over the past 6-12 months and in the short run my PFTs are stable. I don’t feel i breath better (day to day) if I take both pills QD (every day) but in the long run—I suspect it’s better to take as much as one can tolerate. I’m not sure 250mg a day (instead of 300 mg) will make a huge impact either way.

    • #29941
      Mack
      Participant

      Dr. Salzberg

      Do you think two of 100 is as effective as the 150 two times a day ?

      My doctor reduced my does because of severe diaarhea. The 150 stopped my couch and helped my breathing. I hope the 100 will work as well.

       

      Thanks

    • #29942
      Donald Salzberg MD
      Participant

      Hi Mack

      Thanks for reaching out. As an Ophthalmologist and not a Pulmonologist I have to be careful on that answer. The studies used 150mg 2x a day. For sure side effects go down with lower dose. Diarrhea with OFEV seems to ebb and flow (pardon the wording!!!!!). Have you used Immodium or an equivalent? I had nausea issues and found Zofran to work well. Taking after a meal also helps. If the diarrhea subsides on the 109 mg 2x a day—if you still have some 150 mg tablets—consider alternating 150/100 and see how you do. Maybe you can then work your way back to 150 2x. My pulmonologist truly feels OFEV is the better drug. This IDK. These drugs are meant to reduce the acute exacerbations so lower dose for you may work just as well as a higher dose for someone else. Can i ask what your BMI is? If you stay on a lower dose then it would be a good piece of mind to get PFTs done maybe 3x a year instead of 2x. Switching to Esbriet may be helpful in your case but from what I’ve read Esbriet has a higher diarrhea rate and issues with skin rashes (I am a sun worshipper). I hope this helped. Don Salzberg MD

    • #29943
      Mack
      Participant

      Thanks for your reply

      I tried everything for my diarrhea and nothing worked at all.

      Sorry but I don’t know what BMI is.

      My new doctor at UT Southwest Medical In Dallas, Texas has me scheduled for a PFT in three months.

      I weight 150 pounds so I don’t know if the 150mg was just too much or not.  I just hope the the 100 works as well as the 150 did.  Thanks again and i look for to your reply at you convenience.

      Meredith

    • #29945
      Donald Salzberg MD
      Participant

      BMI is Body Mass Index. Over 30 is considered obese. If you weight only 150 you likely have a lower BMI so that will give you more favorable lung study results. So it may be appropriate that 100 mg 2x a day can be as effective as 150 2x a day but i would ask your pulmonologist that. I wish we all could look into a crystal ball to get a sense when your lungs will worsen. Are you on supplemental oxygen? Are your PFT tests relatively stable?  The reality is you will not know whether the 100mg works as well. These meds do not help you “feel better” or “breathe better” today or tomorrow. It’s whether they can slow this progression down over the next 1 to 2-5 or 10 years from now. In theory we all get worse. It’s a matter of how quickly. Maybe we will be lucky??  I’m 67. If it goes real slow i may ultimately be too told for a transplant. One day at a time. I’m grateful I had a great day today. Keep me posted

      Don Salzberg

    • #31184
      Earl Robinson
      Participant

      I’ve been on Ofev for going on 3 years. I started on 150mg 2Xday and my doc had me get blood sample 3 times annually to check my liver function. At one point he suggested going to 100mg due to the effect the Ofev was having on my liver. I take an imodium tablet every other day and eat a meal with the Ofev so I have no serious digestive track issue.
      Wishing you all the best and learning we just have to slow down and take longer to do anything. I’m on 10L of O2 during the day and 6L at night.

    • #31245
      Duncan Fowler
      Participant

      I also had been having lots of diarrhea for the years that I have been taking OFEV 150’s.

      My doc suggested that I might want to go to the 100’s but, I was concerned I might lose ground as far as my IPF went.  She did give me an Rx for 100’s, and I had lots of 150’s leftover.  Rather than waste the 150’s, I decided to take a 150 in the morning and a 100 at night.  I have been doing this for three months now.

      That has worked really well for me.  Now I rarely need to take an Immodium because of stomach upset.

      Dunc

      • #31258
        Duncan Fowler
        Participant

        And, it has turned out that my insurance company continues to support my use of OFEV no matter what the dosage  Each month I get 30 150’s and 30 100’s.

    • #31255
      Donald George
      Participant

      I was able to take a 150 at night and a 100 during the day. Stopped the diarrhea. The problem was the insurance company will only do one or the other so.. now I’m back to 100 twice a day. this is my second year on Ofev.p

    • #31318
      Patrick Coghlan
      Participant

      Interesting discussion.  I’m about to start OFEV in a few weeks so it’s definitely something I’ll ask the pulmonologist about if I start having issues.

      • #31333
        Manzurul Khan
        Participant

        I started OFEV in late January (2 100 mg capsules a day). After 30 days, I went to test my liver functions. Altought I had no GI issues, my liver enzymes shot by 50% in 30 days. I immediately cut down to 1 a day and will test again soon. I am concerned about the medicine damaging my liver. If the enzymes come down to a number within the range, I am thinking of taking 1 150mg a day. Anyone here doing that? I am also curious if my body weight and height has anything to do with it. I am 5’5″ and weigh 140 lbs.

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