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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.

      • #32989
        William Kim Burnett
        Participant

        First let me say everyone has different situations going on. I did ask my doctor about cutting down doses and he told me there weren’t enough studies to show that as an alternative. Needless to say, the Ofev or something else shot my liver enzymes up and they put me on Cell Cept instead. I will also note that the Covid Booster triggered Myopathy in my body and just about crippled me last November so the inflammation could have come from that. I am much better now but no longer take Ofev my body couldn’t tolerate it and the side effects. My enzymes have constantly been dropping and I am walking and stretching out daily and my breathing test are staying steady. Exercise is paramount. I went yesterday and took the Evusheld vaccine because of the reaction to my immune system to the booster. I think Qfev is a great drug I took it for 2 years 100mgs twice a day and it held me steady. I had to adapt to the Cell Cept which is used in all transplant patients in order to alleviate my immune system attacking itself. I still have lung disease, but the scaring is from something else other than P.F.  I will return to Ofev if and when my condition worsens. I give all praise and glory to God in this journey. And pray his blessings on all of you. I would seriously consider alternatives only with my doctors’ approval.

      • #33000
        Susan o
        Participant

        I had a very hard time with the 150 mg so my doc put me on the 100.  I did much better. At times I am still sick with the 100 for a stretch so when I spoke with my doc – he said I know my own body n how it reacts so I could try just 1 a day when symptoms got bad.  It helped .  I normally go with the twice a day but if the nausea n diarrhea get really bad for several days where I can’t really function I’ll drop to 1 a day for about 2 days .  It seems to be much better.  I make sure I have protein when taking pill etc but some days it doesn’t seem to matter.  I have had Ipf for 3 years now.

      • #33001
        Amy
        Participant

        Yes, I tried to split dosages – valiantly! I was unable to tolerate the extra 50mg no matter how I did it. It was worth trying simply because a higher dose would conceivably be most effective. I’m finally back on 100mg twice daily. Try it. The FDA, in its infinite wisdom, means well but patients and doctors are living this. The same FDA has been holding back meds for ALS. 🙄 Work with your doctor and just do what you can live with.

      • #33432
        Amy
        Participant

        Yes. I tied that for the same reason, but I could not handle the GI issues that persisted. I went back to 100 twice a day. Doing well now.

    • #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.

      • #33560
        Michelle Johnson
        Participant

        I have to take 100 two x day because of my bad GI tract don’t think I could go back to the higher dose it also makes me throw up any one else throw up from this OFEV I Was Dx in 2018 in 51 now I was told I have one to two years left before I go getting ready for the transplant experience soon my first appointment is after the holidays

    • #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.

      • #33511
        Bruce F.
        Participant

        Thank you!  That is very helpful.  I struggle with the morning dose and may ask about moving to a 100/150 routine each day.  Good luck to one and all as we navigate our way through the days!

    • #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.

    • #32955
      Millie
      Participant

      I know I’m joining in on this discussion late but better late than never. I started Ofev with 100mg in the am and 150mg in the pm. No problem whatsoever. Did this for a month. Then moved up to 150mg twice a day. The first 3 days i had diarrhea and threw up several times. After that I was fine for a month. No side effects whatsoever. Then, last week, I had diarrhea twice. That has now cleared up and I am again having no side effects. I have been gassy and farting a lot also. My pulmonologist tells me that the studies were done on the 150mg twice a day. Don’t know if the lower dose will be as effective or effective at all.

    • #32957
      Yvonne
      Participant

      Hello Millie

      Not an easy platform for me to start using but here goes a 2nd time.  I have been on Ofev since Feb 2020 and have had issues with nausea, vomiting only 3 times thankfully, but diarrhea that is persistent daily if not taking prescription Imodium to stop or slow it down.  Life for me on Ofev has become like a tough game of chess w/ Ofev being unpredictable and the worthiest of opponents!!!  I plan to ask a new pulmonologist I will be seeing in late September if I can do as you mentioned with 100’s and 150’s, although I’ve read where physicians or the pharmacy are not aligned with doing that.  Seems possible, seems as if a doctor orders that, others should comply.  I’ve hung in there, had my life become awful if I’m away from a toilet for ANY amount of time, and my thoughts keep going back to ‘quality’ of life over ‘quantity’ of life.  Wishing the very best for you and hoping you might be one of the fortunate ones whose body finally adapts to Ofev. Mine thinks it’s poison & I will not take Esbriet due to the sunburn situation.  Blessings always

      • #32959
        Millie
        Participant

        Hi Yvonne:
        I hope you are on a good, healthy diet. That can make a difference. I totally abstain from alcohol. Drinking wine breaks me down and caused diarhhea so I don’t imbibe anymore. Why ask for trouble. Limit sugar intake as well as fats and fried foods. I also take daily probiotics and eat yogurt. Try Metamucil. My doctor recommended it for diarrhea and it really works. It bulks you up. Tolerating this Ofev is really a game of trial and error. I always have a diaper with me if I have to go out for a long time. And, I’ve had to use it. Yes, every day is an adventure on this journey—-not always the kind of adventure you want.

        • #32963
          J L LaBrack
          Participant

          I’m in my fifth year (diagnosed in May 2018) and I guess I’m lucky to the extent that as a 79-year-old male, I’m too old for transplant(s) and not yet on oxygen.  The quantity vs. quality-of-life issue mentioned here is a prime concern for me, and I’ve made a decision to not start either Ofev or Esbriet for two reasons.  The first is the exorbitant cost (which would leave my widow without enough); and the second are the nasty side effects of these drugs.  My SAT resting rate is still 94-95%, but when it eventually lowers to 88%, I’ll have another decision to make: go on supplemental oxygen, or cash it in rather than being tethered to a tube.  Having a “rare” disease like IPF is nasty, since medical research in the U.S. is focused on more common ailments.  The reality is that no-one gets out of this alive.  Mass General Brigham has nothing further to offer and agrees that the cost-benefit ratio of Ofev isn’t worth it.

        • #32985
          Millie
          Participant

          Hi J.L. Labrack: My resting oxygen is 93 to 97 but when I walk it drops down into the upper 80’s so I have to be on oxygen 24/7. I don’t really find it to be a problem. I’m out every day and even go to the beach and the pool. I have Inogen portable units. The small one only weighs 3 pounds and I wear it like a shoulder bag. I go to the gym and exercise with oxygen and don’t find it to be a problem. Of course, I did all these things and more before being diagnosed in December 2021. I’m 82. I’ve been on Ofev since April. I get it for free as my doctor sent in my tax return for me. I must admit, I’m not exactly low income. I’ve been tolerating it very well. Everyone is different and if you don’t even try, you won’t know how it will affect you.

      • #33421
        Mike
        Participant

        I’ve felt rotten from Ofev also.  Imodium stops the runs, but the medicine just made me feel sick.  I did a lot of reading on the studies done on Ofev and it’s effectiveness.  I read some trial studies that Ofev does slow the progression of IPF, but does not extend survival times.  I asked my Dr., and he said that he also saw the study, and doesn’t have an idea as to why survival times were not extended.  So I stopped taking it.  My lungs are crumbling and my endurance is non existent, but I feel otherwise fine.  After a good rest, I forget that I am dying.  The author, Jack london said once, and I’m paraphrasing it:  ‘I would rather live now than to work to extend my days”.

    • #32960
      Jim
      Participant

      For over a year I have been taking a 100 at mid day and a 150 at night
      My pulmonologist concurred and it reduced the side effects.

    • #32966
      conni
      Participant

      I think the one reality here is that Ofev does not cure or fix anything,like breathing,it simply slows the progression of the disease. Doctors for sure will never do something the drug company doesn’t reccommend or fda approves. But as a thinking human being I can make choices on dosage.

      Since I do not have ipf but rather hypersensitivity pneumonitis (they think)I have learned to research myself and trust my own judgement.

      The doctors know little about my disease since it wasnt from a factory setting,and even less on what to do for it. So while I do believe Ofev can slow progression down,I am a realist about its other capabilities.

      conni b

    • #32986
      John
      Participant

      I too have been troubled by evening nausea but I am able to control it with protein shakes. Why evening only??

    • #33416
      Carmen Quintas
      Participant

      Hi,

      I ‘ve been taking 150mg of OFEV 2X a day.I started in March.I did great until July.In July I stared with diarrhea issues.I’ve been struggling ever since.It is definitely a quality of life issue.I’ve been taking Imodium every day.Sometimes it’s 2 or 3 times a days ,depending on my plans for the day.I just made an appointment with a gastroenterologist to see if they could help.I did think of suggesting to my pulmonologist that he lower the dosage,100 in AM and 150 in the evening.I’m not sure that my insurance will allow this, but I’ll try.I’m also going to try the Metamucil. I am really grateful to have found this group.I’m learning from all of you

      Thank you

    • #33457
      Carmen Quintas
      Participant

      My pulmonologist lower my OFEV dose to 100mg 2x a day.My insurance will not pay for a combination dose of 150/100.I will be off of OFEV for a week or two before going on my new lower dosage.It will give my stomach time to settle down before starting the new lower dose.Keeping my fingers crossed that I’ll tolerate it well.

    • #33497
      José
      Participant

      After 13 months they lowered mine from 150 to 100. I asked if I should finish the 150s I have left or the 100 in AM and 150s at nights, but was told just to put them in the fridge in case I get changed to 150s again but do not mix.

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