• Joy Hoffmann

    Member
    October 13, 2021 at 7:54 pm

    I am going from 150 mg to 100 mg because of gas and diarrhea  Is the lower dosage just as effective as the higher dosage.

    .

     

  • bobb

    Member
    October 16, 2021 at 9:07 am

    Hi Joy:

    For diarrhea I went from 150 to 100 over a year ago.  It solved the diarrhea problem and as far as i’m concerned it is just as effective.

    • Millie

      Member
      July 10, 2022 at 9:48 am

      My doctor didn’t answer me when I asked if the 100mg twice a day would be effective.  He said the trials were done on the 150mg twice a day.  Glad to hear that someone on 100mg is finding it effective.  That was a big question mark in my head.

  • michael-b-smith

    Member
    January 14, 2022 at 11:59 am

    Starting Ofev (150 x 2) tomorrow.  After reading all of the posts, I have to admit I am pretty apprehensive.  Wish me luck!

     

    (Off to buy some Imodium and protein bars).

  • bobb

    Member
    January 14, 2022 at 2:40 pm

    Good luck Michael.  You will be fine.

    • michael-b-smith

      Member
      January 19, 2022 at 10:17 am

      Thanks.  So far so good, but it is still the early days.

  • jross

    Member
    January 27, 2022 at 4:26 pm

    <p class=”p1″>Hi folks. Just starting my second week on OFEV. So far no news (side effects) is good news.</p>
    <p class=”p1″>I waited 2 years after my initial hospitalization and diagnosis (for IPF and embolism, which nearly killed me) to start OFEV, because for much of that time, if anything, I was improving rather than “progressing.” I was also leary of the side effects of both OFEV and Esbriet.</p>
    <p class=”p1″>I’m actually seeing 2 pulmonogists (alternately), my original doctor in Middletown, CT., and another at Yale whom I saw both for a second opinion and to participate in a clinical trial (now finished). The Yale doc said OFEV’s “numbers” looked better and my Middletown doc said she had patients on each drug, but that OFEV had been somewhat better tolerated. She also said she would switch me to Esbriet if I could not tolerate OFEV.</p>
    <p class=”p1″>I’ll check in from time to time if I have more to report.</p>
    <p class=”p1″>Thanks all. I’m very grateful for this forum. I read every comment here before starting OFEV!</p>
    <p class=”p2″>John</p>

    • bobb

      Member
      January 31, 2022 at 1:38 pm

      Good luck John.  You will be fine on OFEV at 100mg.

  • manzurul-khan

    Member
    January 30, 2022 at 10:09 am

    I started on 100 mg Ofev pills yesterday, today is the 2nd day. I have not experienced anything unusual yet. I made sure I had a good breakfast, cottage cheese+ veggie sausage on whole wheat bread + tea. I had normal food for lunch and dinner. No side effects yet. I wanted to have a normal eating habit since I work full time and want to blend it in as seamlessly as possible. I drink lots of water which should help. Although I don’t have any visible symptoms yet, I developed a dry cough in the last 15 months since diagnosis mainly in the morning, but it’s mild and intermittent. Thanks to all who posted before. I gained a lot from others’ experiences and hope to be of value to others.

    Best wishes.

    Manzurul

    • bobb

      Member
      January 31, 2022 at 1:40 pm

      Good luck Manzurul.  You will be fine.

  • ida-anker

    Member
    February 2, 2022 at 1:03 am

    I was diagnosed with IPF in Oct 20, and started OFEV in jan 21. I believe the only reason why the doc reccomended OFEV over Esbriet was the number of pills daily (2 vrs 3) I think he mentioned early stage, however later on another doctor said moderate as my gas diffusion (DLCO) is at 44 % only, whilst lung capacity still 70 %. No side effects for the first 9 months except a lot of gas.  Then the diarreha started. This is managable with Imodium. Last check up in Sept 21 showed no progression, looking fwd to next appointment in March. Sorry for any wrong spelling as English is not my native language. Stay safe.

  • david-williams

    Member
    March 18, 2022 at 8:36 pm

    Hi Charlene

    I was diagnosed in 2015, I knew spmething was going on with but thought it was just age and … After an employer screening, I found a pumonoligist to tell me what exactly the spot was on the xray.

    I started OFEV 2 days ago. I had heard about OFEV but no one talked about it. Esbriet was never mentioned. I recently had a flair up and was prescribed 2L O2. At that time the Dr. indicated that I had progessed a little and discussed going to OFEV and the possible sever at times side affects.

    Because of complications with the recent flair up I opted to get to the Pulminoligist as soon as possible, so in early Febuary I saw a new Pulmonoligist and the OFEV was ordered. I am a Veteran and use the VA system so an approval process was gone through to get the OFEV.

    As of now I take 1 tablet a day for 30 days then on Easter Sunday OI start 2 a day. At this time I seem to tolorate it fine with a little stomach dicomfort. I have started my withdrawl from caffinated coffee, (which as a retired Sailor, I will miss) but …

    I have PF (Asbestosis) most likely from my past Naval Service and and civilian employment.

    This is my first post, thanks for being here you have helped answer a lot of my questions and concerns. I will keep posting as time gose on

    thanks
    Dave

    • Charlene Marshall

      Member
      March 19, 2022 at 9:16 am

      @nwdew

      Hi David,

      I’m glad you didn’t need OFEV for a number of years post diagnosis, that sounds like good news and that your fibrosis was developing slowly. I hope you continue to tolerate the OFEV ok, especially upon increasing the dose to 2 tablets. It was difficult for me, but together with my pulmonologist we figured it out. There are a lot of ‘tips and tricks’ on this site on learning to manage OFEV so do check back if it becomes problematic for you. Wishing you all the best and thanks so much for writing. Glad you’re part of this special community of people!
      Char.

       

  • rand-mcfarland

    Member
    April 8, 2022 at 5:43 pm

    I was recently diagnosed with interstitial lung disease. My doctor prescribed Ofev. What research I have done seems to indicate it is a very harsh drug. I would appreciate some advise about diet. I normally eat a very common, maybe bland diet. Breakfast is oatmeal, yogurt, eggs, and fruit juice with protein powder mixed in. Rest of the day is soup, sandwiches, fruit, potatoes, common vegetables, V-8 juice, herbal tea. Does anyone have experience with foods which minimize the Ofev side effects of digestive disorders?

  • Charlene Marshall

    Member
    April 10, 2022 at 2:40 pm

    @rmcfarla

    Hi Rand,

    Thanks so much for writing although I’m sorry to hear you’ve been diagnosed with an interstitial lung disease and have to start Ofev. It was a tough drug for me to get used to; a lot of GI side effects and figuring out what types of things triggered those issues for me. Dairy is something I have to stay away from since starting Ofev and I now use dairy substitutes wherever possible like coconut milk, lactose free cheese etc. Sounds like you eat a really good diet already, but it may be necessary for you to add some more protein into your diet to manage the Ofev, especially starting out. I also found a cup of water when I started to eat, then the pills, then another cup of water helped with eating in between. I started on the 150mg dose twice daily and had to go down to the 100mg as I couldn’t tolerate the higher dose. After some time I was able to work up to 150mg and I’m still on that now. I also carry sublingual imodium with me (not the pill form, the dissolvable one under the tongue) just in case. I don’t really have any GI issues now, but starting it was tough for me so have patience with yourself. With all that said, as you can see above, some people have no issues with Ofev and tolerate it well. Each person is a little different!
    Take care,
    Char.

  • jross

    Member
    April 12, 2022 at 9:35 pm

    Hi Rand,

    Based on my own brief experience (about 80 days since starting OFEV) I’d recommend that you stick with your normal diet unless and until you have a problem. Even the  manufacturer’s menu recommendations apply only “when you have diarrhea,nausea, or vomiting.” I have avoided nothing and only occasionally supplemented it with a modest amount of Ensure or Boost, and/or some banana and/or yogurt with my pill. So far, I’ve had no side effects.

    One thing I’d explore with your doctor (although I failed to do this) is starting on a reduced dose. Many folks here who have had side effect problems have been able to successfully continue OFEV by either  temporarily or permanently reducing their dose. I (admittedly a non-MD) don’t really see a downside in just starting this way.

    John

  • bobb

    Member
    April 13, 2022 at 10:21 am

    Rand:

    I’ve been on OFEV since 2015 and I see you are getting some good input from Charlene and John.
    Your diet is very similar to mine starting with oatmeal in the morning. My only advice is to make sure you have something to eat before taking OFEV. After breakfast is no problem. I have my second pill around 9.30pm. I eat a muffin ahead of taking pill and I have never had a problem with nausea or, with one exception, any other side effect.  The exception is of course diarrea. By digestive I assume you mean diarrea. You may never have a problem but if you do you may be able to tolerate it. If not your physician may drop you down from 150mg to 100mg. That what mine did.
    Hope this helps.

  • Dennis Skahen

    Member
    April 14, 2022 at 3:38 pm

    Charlene

    I was on OFEV from OCT 8, 2021 until 4.11.22 (had a TIA mini-stroke on 4/11/22), and today after speaking to my pulmonologist will be taking Esbriet.  While taking OVEV I had no problems at all!

    My pulmonologist’s only warning is the potential of sun skin damage.  I’ll need to cover up while outside.

     

    Good luck with your decision!

  • veeraraghavan

    Member
    April 21, 2022 at 1:29 pm

    have dry cough, started shortness of breath. Am 88yrs

    Starting OFEV now, will it help?

  • veeraraghavan

    Member
    May 6, 2022 at 9:00 pm

    Do the Ofer, esbriet work well for 88 yr old?

    • christie

      Moderator
      May 7, 2022 at 1:15 am

      It all depends on the individual. Your doctor should help you choose which one would be better for you.

  • pamela

    Member
    July 9, 2022 at 10:36 am

    Hello Everyone!  I am on Ofev and I noticed this thread has been around a while, hope that someone here can give me some insight regarding HOW Ofev is taken.  I feel silly asking this question but I am going to ask it…

    I can’t swallow pills, trust me I’ve tried everything… I always end up gagging.  Currently I am cutting open the top of the Ofev capsule and putting it on a piece of bread with jam (it tastes bitter).

    Outside of the fact that I am probably not getting a proper full dosage, has anyone else done this, is this dangerous?  I am going to talk to my doctor about upping my pills to the 150mg dosage and letting her know how I’ve been taking the meds (been on it a couple months), currently I am on the 100mg twice a day dose.

    Thank you in advance for your help!

    • christie

      Moderator
      July 11, 2022 at 8:47 pm

      Hi Pamela, Sorry to be the bearer of bad news, but as per the drug insert, and information on drugs.com you are not supposed to take this medication in any way other than whole. Breaking, chewing, or emptying the capsule can be bad for a number of reasons. I am not a doctor so I am not familiar with the specifics with OFEV, but I used to be an MA at a pain clinic so I have some knowledge on the subject. Reasons for this indication are either:

      1. the capsule is formulated to release the medication after a certain amount of time (sometimes pills are coated such that they dissolve in the small intestine rather than the stomach, for example). This can help with proper absorption of the medication, as well as prevent unpleasent effects such as burns in the esophagus, reflux, etc.

      2. it can actually be dangerous to come in contact with the drug formula outside of its intended use (like, if you inhale particles after opening the capsule, or get it on your skin). Here is an abstract from an article on PubMed that explains better, “The person who crushes the tablets or opens the capsules is exposed to drug particles, which may be carcinogenic, teratogenic or fetotoxic. They are sometimes allergenic. In practice, there are many drugs that should never be crushed or opened. Before crushing a tablet or opening a capsule, it is better to consider and research the impact it will have on the drug’s effects. It is sometimes preferable to use a different dosage form, or a different active ingredient.”

      Now, as others have stated, your doctor should know best. Perhaps OFEV is one where exceptions could be made, as it is only available in this form. But you won’t know that unless you ask, and until then you could be doing more harm than good and putting yourself at risk.

  • Millie

    Member
    July 10, 2022 at 9:42 am

    I don’t think what you’re doing is a good idea.  Check with your doctor.  I was told to take it with protein—-peanut butter rather than jelly.  I have been on 100mg twice a day for 2 months and just started to raise my dose.  I’m taking 150mg in the am and 100mg in the pm.  So far so good.  Next week I will go up to the 150mg dose twice a day.   I’ve heard horror stories about side effects but i know that i need to be on the maximum dose.   Let us know what your doctor says .

  • bobb

    Member
    July 11, 2022 at 3:27 pm

    Hi Pamela:  I agree with Millie that you should consult your Doctor about taking OFEV out of the capsule.  But I do know about gagging.  I have one fairly large pill that gives me a problem.

    It is possible that Ofev might be delivered in another form (for example liquid).  I haven’t heard that there is another form available but it is possible.

    By the way don’t believe all those horror stories about side effects.  The most common one is diarreha.  Just make sure you have something to eat (a muffin for example) before taking the medication.  If it turns out you have to stay at 100mg and not 150mg, so be it.  Good luck and let us know how you get on.

  • rob1ert-henderson

    Member
    October 19, 2022 at 9:30 pm

    I started Ofev in March after my IPF diagnosis.  No problems initially, but thing got worse.  Diarrhea was a problem, but I dealt with it (large supply of Depends).  The bigger problems were loss of appetite (food nauseated me) to the point of losing 25 lbs in 3 months and complete lack of energy (slept a lot, lost interest in most events in my life)  Ultimately my pulmonologist had me stop Ofev for 4 weeks.  Within days my diarrhea stopped and my energy returned.  So what to do?  My pulmonologist had no suggestions.  After reading thru the Starting Ofev forum,  I have learned some things.  1) I started Ovev again, willing to take some risk.  2) I will stop it for a brief period when things get too bad  3) I will look for another pulmonologist to provide a 2nd opinion ( my current one is unwilling to give me any information regarding the severity of my condition or any recommendations).  I would appreciate any comments or suggestions regarding my experiences.

    Bob Henderson

    • gerry-t

      Member
      March 8, 2023 at 1:23 am

      If you’re on the 150 mg dose, try going to the lower dose 100 mg capsules.  It may help to reduce your side effects.  Also, get a second opinion if at all possible.  Sometimes it’s just a matter of compatibility between you and your doctor that can make a big difference in your treatment.

      Good luck.

    • gerry-t

      Member
      March 8, 2023 at 1:24 am
      1. If you’re on the 150 mg dose, try going to the lower dose 100 mg capsules.  It may help to reduce your side effects.  Also, get a second opinion if at all possible.  Sometimes it’s just a matter of compatibility between you and your doctor that can make a big difference in your treatment.

      Good luck.

  • william-e-shotts

    Member
    January 24, 2023 at 4:54 pm

    Here are my answers concerning my Ofev experience:

    1. I started Ofev about 6 months after my October 2020 diagnosis.

    2. I was not told at that time about the severely of my IPF. I had a surgical biopsy soon after and learned I did indeed have IPF showing mild to moderate progression.

    3. Choosing Ofev was my decision as the Doc indicated either would be indicated for my situation. I chose Ofev because of the twice daily dosage.

    4. I have been taking Ofev for 21 months.

    5. I have several of the side effect of Ofev. Diarrhea is the most challenging. I also experience stomach pain, stomach cramps, and nausea.

    6. My diagnosis after exhaustive testing has been determined to be IPF.

    The following is my unsolicited and unsupported opinion as to a possible cause of my IPF:

    I am a U.S. Navy Vietnam veterinary with VA verified agent orange exposure. I feel strongly that there is a connection between my exposure and my IPF. Unfortunately the VA has denied the claims I have filed with my assertions.

    Bill

    • richard-halderman

      Member
      March 7, 2023 at 3:26 pm

      I was diagnosed in 2015 and started OFEV in 2022. My p
      PF is Idiopathic and at the start of OFEV I was in the moderate range. Unfortunately I could not tolerate it. After 5 months of starts and stops and loss of 45 lbs. due to gastrointestinal reactions had to finaly give up. Hopefully another med will come along that I can tolerate.

      • robert-gross

        Member
        March 7, 2023 at 4:12 pm

        As far as I know the only alternative is Esbriet, which didn’t  work for me so I’m back on OFEV. It’s been over 6 year. I have the usual GI issue but not nausea. However, the GI issues and loss of appetite meant that I’ve lost about 85 pounds.

  • keith-emery

    Member
    March 7, 2023 at 11:16 am

    Hello from Scotland,
    I was diagnosed with IPF in September 2015 after a bout of pneumonia. All was well during the ensuing years, until our holiday in the Algarve, Portugal, in June 2022. I contracted Covid 19 over there and became seriously ill and hospitalised for a month, as the Covid 19 had ravaged my pulmonary fibrosis and doubled its size. Consequently, after breathing tests, I was prescribed Ofev and commenced my treatment in January of this year. I was given a choice between the two drugs but I chose Ofev because of the possible side effects of Esbriet (we are outdoor lovers and spend a lot of the year in the fresh air and sunshine [not too much of that in Scotland, so we have to take advantage of it]). I have now been taking Ofev for about eight weeks and suffer the side-effects of nausea (most days), vomiting occasionally, diarrhea from time to time but frequently constipation. I have also put on an incredible eleven pounds of body weight since starting on Ofev, my eating regime has not changed and I cut out alcohol for a month to see if that helped. This seems to differ from most other Ofev users that I have read on this forum. My Consultant believes that my scarring may have come from Tuberculosis when I was a baby. I know I was never a long-distance runner and although I played sports up to the age of thirty, I was always breathless throughout.

  • kathy-whitehead

    Member
    March 8, 2023 at 1:04 am

    I was diagnosed with IPF in 2016 and like Keith Emery all was well during the ensuing years.  In January of 2021 I contracted Covid 19 and was seriously ill for about a month with one trip to emergency. This totally flared up my IPF, I was prescribed Ofev 150mg in October of that year.  I had all the side effects listed above plus my liver numbers went sky high!  My Doctor took me off Ofev for 3 months and we tried again ……… same experience all over again.  Went off again for 3 months and then started on 100mg, bingo!  No more severe side effects just the diarrhea and my liver is fine now.  I take an anti-diarrhea pill every morning and it seems to help, but it is a constant problem,  I have quit dairy and caffeine and that does seem to help.  Sometimes I go off ofev for a day or so and it seems to help.  My IPF has not gotten any worse and I have not had to go on oxygen at all.  I do have trouble with being breathless at times (stairs, hills, exercise classes).  But at 72 I think I’m doing pretty well!

    My mother died from IPF in 2007 (before OFEV) we asked our doctors if it was inherited and they all said no.  HA HA not so!  There are 6 of us siblings and I (the oldest) have it and last year my brother (8 years my jr) was diagnosed with it.  So we are both on Ofev now and living a full life with mild limitations.  I think my mother had it for several years before being diagnosed in 1998 after fainting at my sisters in SLC (5,000 ft. elevation not good).  They tried prednisone which made her get fat and I think made her worse, then she went on Oxygen and could hardly get up out of bed by 2001.  Then we heard about Interferon Gamma 1B, It was a miracle drug but she had to give herself shots every day.  For 3 years she felt better, not perfect but better and less oxygen was required.  She was even able to make it to 3 of my kids weddings.  Unfortunately it stopped working, which happened with everyone who was on it for IPF, but she had 3 good years because of it.  Her last 1 and a half years were totally spent in bed but she was able to talk with us give advice, write more poems (her passion) and see several more grandchildren added to the family!

    Needless to say all of my other siblings ran to their doctors to get tested and so far it’s only my brother and I affected out of the 6 of us.  I worry about my 5 kids now and my 16 grandchildren (not to mention my 60 some nieces, nephews and great-nieces and great-nephews) but I am confident a cure is coming!!  I’m praying for it every night for all of us!!

    Good luck to you all, we live in an amazing age of medicine!  Never give up!!  I’m continuing to take ofev dealing with the diarrhea and waiting for the cure!!!  It’s coming!!

     

  • dub-karriker

    Member
    March 8, 2023 at 9:44 am

    Hi all. I’m new to the group and wanted to share my experience with OFEV.

    • How long after your diagnosis of PF/IPF did you start taking Ofev? Within 5 months.
    • When you started Ofev, had your Doctor shared with you whether your PF/IPF was mild, moderate or severe? Yes. It is mild heading toward moderate.
    • When being prescribed Ofev did you ask or did your Doctor offer to explain why they chose this drug over Esbriet? Yes. My doctor indicated that of the two OFEV was generally his preference as the first option, although the outcomes were similar. He said OFEV had a longer track record to measure against.
    • How long have you been on Ofev? I was on it for one year. I stopped because of the side effects.
    • Can you outline some side effects you have experience as a result of being on Ofev? I had gas, bloating, stomach pain, and diarrhea as expected but it was manageable. What I did not expect was that I developed crushing headaches that intensified as the day went on. At first I did not connect this with OFEV. My primary doctor and I tried to determine the cause and I began monitoring my blood pressure. When I had the headaches my BP was sky high. I was convinced OFEV was the cause. I started the day with normal BP, took OFEV with meals and watched it climb shortly thereafter. My pulmonologist and I agreed to discontinue OFEV as a result. My BP returned to normal and stayed there. The headaches stopped. The IPF did not progress measurably during that year.
    • Do you have PF (with a known/suspected reason for the disease development) or IPF? I have IPF. I lost two close friends to this disease but there is no common link other than friendship.

    I am blessed that my condition is stable and the IPF has not progressed much. I attribute that to faith in God, prayer, and divine intervention. I am almost 3 years from diagnosis and had noticed shortness of breath and fatigue for about a year prior. I waited until I was 65 and on Medicare to be tested due to financial concerns. The cost of OFEV was mostly covered by grants. I only paid for the first prescription. My pulmonologist set me up with a month of Esbriet after I stopped OFEV. I never started it because I am stable with only a small % of decline. If that changes I would consider trying Esbriet to slow the progression.

  • hans-m-fink

    Member
    March 9, 2023 at 6:32 pm

    • How long after your diagnosis of PF/IPF did you start taking Ofev?
    Immdiatly. Actually my Respirologist left the choice to me & I chose OFEV.

    • When you started Ofev, had your Doctor shared with you whether your PF/IPF was mild, moderate or severe?
    My IPF was moderate.

    • When being prescribed Ofev did you ask or did your Doctor offer to explain why they chose this drug over Esbriet?
    Esbriet users must be careful being in the sun & I like being in the sun.

    • How long have you been on Ofev?
    Started in 2017 after my diagnosis.

    • Can you outline some side effects you have experience as a result of being on Ofev?
    Had all the stated side-effects you can have including losing 50lbs weight. The worst is continuously upset stomach.

    • Do you have PF (with a known/suspected reason for the disease development) or IPF?
    I have IPF.

    NOTE: Stopped OFEV October/2022 thru the end of the year. Immediately felt better (except for breathing issues).
    Tried it again beginning January for 2 weeks. Side-effects returned. Now I chose quality of life over Quantity.

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