• thom

    Member
    May 16, 2020 at 2:24 pm

    OFEV SIDE EFFECTS AND ME

    I’ve been on the stuff for almost 18 months.  Who’s keeping track!

    Its brutal to me. To say the least.  Rash on my arm, red itchy ears with infection that comes and goes.  A little pain, but I’ve adapted to it.  I was told at Yale I had cirrhosis. but evidently my liver is going back to normal.  They told me to stop taking all supplements PERIOD.  Dont take anything that is not FDA approved. I was told most claims are false, they were speeding up cirrhosis due to the Ofev.  Seems the doctors may have been right in my case.   I feel better, diarrhea has stabilized.   Admittedly I go back and forth with the diarrhea.  Its difficult to understand how it works.  Constipation to diarrhea.   I try to not stray too far from toilets.  The gas. AKA, flatulence is horrible.   God help my poor wife !!  But we both seem to get a good laugh

    After 12 months I had a CT Scan on my lungs.  Pulmonologist said apparently the Ofev had slowed down the progression.   When he listens to my lungs he said the “broken glass” sound had not changed.  I imagine that’s good. . . It’s not worse !

    I’ve lost about 12 lbs, I can afford to lose more.  I find myself very tired, but I do have other things going on.  Two compressed discs in lower spine, and double hernia.  Which I’m now reading can be caused from Ofev.  I’ve spoken to 3 surgeons about hernia.  Because I’d have to be connected to ventilator no one will touch me.  Frankly after hearing about ventilators with Covid, now I understand why.  Both have told me I’d probably be connected forever.  Soon I’m seeing yet another surgeon hoping I can find a dr that will use a local aesthetic.

    As I said. The good news in all this unexpected illness is that apparently the Ofev is doing what its supposed to do.

    Good luck to all.

    Thom,  CT

     

     

     

  • Charlene Marshall

    Member
    May 23, 2020 at 9:59 am

    Hi Thom,

    Thank you so much for sharing your experience with us, albeit difficult symptoms of the dreaded OFEV – I’m sure it will benefit others currently on the drug or who are considering it. I hope the unpleasant symptoms continue to be manageable for you, and I am glad to hear the drug (although unpleasant!) is doing its job for you. Take care, Charlene.

  • kathyann

    Member
    June 10, 2020 at 4:34 pm

    I just read your post – – diarrhea UGH .  I had a real struggle with it too.  Doctor reduced me the 100 mg and it was a little better but I also only felt comfortable going somewhere by taking one Imodium.  After over a year living this way my family doctor said for me to try taking a daily fiber tablet.  I take just one but you can take more  –  it has helped soooooooo much !!  My diarrhea is  not the explosive horror anymore – usually have a fairly normal soft bowel movement with only some occasional diarrhea usually from eating something greasy or spicy.  I just bought the store brand fiber pills that says daily on the bottle.  Give it a try – – I hope it helps !

  • williesmom

    Member
    June 10, 2020 at 7:16 pm

    Hi All,

    Doctor Salzberg, Yvonne and Charlene:

    Thank you for all your help during my initiation to OFEV. It’s been just over 3 months since I started. I have learned so much. I am not nauseous anymore!! I do occasionally get diarrhea but if so I take an Imodium and it stops it. I believe that my body needed to adjust to this med.

    My doctor was not willing to lower the dose from 150 to 100 after only trying it for a bit over a month.

    Yvonne, you told me everyday is a new journey and I totally agree.

    I have found that unsweetened almond milk seems to be a great coating for my stomach. I prefer the vanilla flavor and I have it with breakfast and dinner.

    I have found that certain foods have a very metal taste, primarily beef. I was never a big beef eater but used to love a good burger. I don’t enjoy burgers at all now. I also have a hard time with tomato sauce, it seems to taste bitter.

    I also do take my pills mid meal.

    My hair loss has significantly slowed down as well. I did buy the shampoo and conditioner that Charlene recommended. Thank you! I did just have TSH and Free T4 test and have yet to review my before and. after with my pulmonologist.

    I know Open Doors doesn’t say that hair loss is not a side effect of OFEV and my pulmonologist has not had other patients with this issue. I did call Boehringer Ingelheim and speak with a pharmacist who told me there was a  blind study done  and .08 % of patients on OFEV showed hair loss and .04% in the placebo group showed hair loss so it really a minimal delta.

    Lastly, on hair loss if you read about OFEV in Australia, where a lot of research is being done, hair loss is listed as a side effect.

    My biggest complaint is that I am quite tired. I am not a good sleeper and fall asleep very late. I have an appointment with a sleep medicine doctor shortly to try to get some help.

    Thank you all  for your help, now that i have made it past 3 months I am much more comfortable with this drug.

    But due to COVID-19 and residing in the NY area my pulmonologist still has both my husband and myself in isolation till further notice.  Fortunately, we enjoy being home.

    Best to all,

    Jane (@williesmom)

  • Charlene Marshall

    Member
    June 13, 2020 at 12:54 pm

    Hi Kathy,

    Thank you so much for sharing this information with us – I have no doubt that it will help so many patients! Unfortunately the diarrhea, as you know, is one of the most unpleasant and frequent side effects of Ofev. It really does impact some patient’s quality of life, and even a reduction to the 100mg dose isn’t enough to help. I’ve not yet heard the fibre tablet suggestion, this is really great to know. I will keep it in mind and I am sure others who read this will be really grateful for the tip as well. Thank you for sharing, and I am thrilled to hear this has helped you!

    All the best,
    Charlene.

  • Charlene Marshall

    Member
    June 13, 2020 at 12:58 pm

    @williesmom ,

    Hi Jane,

    Thank you so much for writing and sharing this experience with us: I am thrilled you’re managing on the Ofev! I know it is a tough drug to tolerate, so really glad you’ve found some information on this site that has helped with that adjustment. It sure takes time, I agree 🙂

    Glad the hair loss has subsided a bit, along with finding a milk that coats your stomach to help. Keep us posted on how you’re doing, I really appreciate hearing this update.

    Take care,
    Charlene.

     

  • Libby

    Member
    June 13, 2020 at 1:38 pm

    @williesmom

    Hi Kathy,

    I was so interested to read your note about your physician recommending a fiber supplement to help counteract the diarrhea.  I have had episodes of IBS for a number of years and I used to take fiber all the time.  Since I haven’t needed it lately, I completely forgot that it can be very beneficial to slowing down your digestion and helping form normal stools.

    I wanted to ask if your doctor recommended a specific brand or type of fiber?  I just did a bit of reading on the subject and there are so many to choose from and they all use fiber derived from different sources — psyillium, methylcellulose, inulin, etc.

    Any help is appreciated.  Thanks so much!

    Libby Fisher

  • mona-klein

    Member
    June 29, 2020 at 8:38 am

    Hi All,

    I’ve been on Ofev for about a year and a half, started of on 150 mg had to change that because of the diarrhea about five  months ago so now I’m on 100 mg but it’s still really bad they gave me loperamide to take, but I hate take them as I get really bad cramps and bloating and I don’t want to take more pills does anyone have any natural remedies….Very frustrated at this  point I want to stop take them all together and find natural remedies. Does anyone else have this problem.

    any help will be much appreciated …. Mona

  • Charlene Marshall

    Member
    June 29, 2020 at 3:30 pm

    @mklein

    Hi Mona,

    Thanks so much for writing but so sorry to hear you’ve having GI troubles with Ofev. It can be such a difficult drug to adjust to. I also had to go down from 150mg to 100mg originally, and struggle occasionally with the terrible side effects. I know you mentioned you didn’t want to take any more pills for the side effects (understandably) but I wanted to share something that really works for me: immodium *sublingual* tablets. The oral immodium tablets didn’t help me at all, but it was recommended I try the sublingual tablets that dissolve under the tongue, and they made a huge difference! I know two other people on the forums found they were helpful also, maybe worth a try? Let me know if it helps, but sorry to hear of the difficulty you’re having with the anti-fibrotic. Take care.
    Charlene.

  • mona-klein

    Member
    June 29, 2020 at 5:36 pm

    Thanks Charlene,

    I will definitely try them……I will let you know how it goes so frustrated these days with this side affect… Thanks Mona

  • Charlene Marshall

    Member
    June 29, 2020 at 8:53 pm

    Please do Mona, I hope they’re helpful! Keeping my fingers crossed for you, I know it is such a tough side effect to deal with.
    Charlene.

  • Libby

    Member
    June 30, 2020 at 10:41 am

    @mklein

    Hi Mona,

    I thought I would try to offer some help in response to your note about natural supplements that could help the Ofev associated diarrhea.  I have only been on Ofev for 3 months so things that help me now might not work a year from now.  But I have come to the conclusion that each day presents a different situation and I can’t figure out why everything happens — it just is what it is.  I have always had a strong interest in natural supplements and have had to battle IBS over the years so digestive issues are familiar to me.  I do a lot of research online and read a lot of reviews of products on Amazon .. I think Amazon is probably the largest purveyor of natural products anywhere, so they are my go-to source. — you can just search “natural treatments diarrhea” and start reading.  You can also search any product on the NIH website or MAYO Clinic and they tell you about side effects, efficacy, etc.  Here’s a rundown of things I am taking that seem to keep my system on a fairly even keel:

    1. The most important is a really good probiotic.  If you are battling diarrhea, your body is losing an awful lot of the beneficial bacteria that are supposed to be in your gut.  A good all-purpose probiotic , once per day, is super important.  And rotate your products — I was told that your system gets used to one combination of bacteria strains and you need to switch things up to keep your healthy bacteria flourishing.  If you don’t already take a probiotic, it might make you gassy at first- – that’s just your system flushing out old stuff– try to keep at it because the benefits are worth it.

    2.  Saccharomyces is a different type of probiotic — it is yeast based.  It is excellent for combating diarrhea and is the recommendation for helping to cure c-diff (which we know causes horrible diarrhea) and also very important for combating diarrhea associated with taking antibiotics.   You can take 1-2 saccharomyces once or twice a day depending on your symptoms.  <span class=”matches” style=”box-sizing: border-box; font-weight: bold;”>Saccharomyces</span> Boulardii (10 Billion CFU Per Serving) – 120 “Acid Resistant” VCaps | Patented & Clinically Studied Strain | Antibiotic Resistant -Lacto  
    3.  Another writer on this forum suggested taking fiber.  I started on that a few weeks ago and it does seem to help a lot … I just bought the store version of Citrucel tablets.   I take 2 at breakfast and 2 after dinner.

    4.  Peppermint gel capsules — Peppermint has been used for ages to combat diarrhea — it can cause a little burning in your stomach so I have found that taking it right after eating prevents that.
    IBS Relief Supplement by Doctor MK’s®, Compare to IBgard® Ingredients, 90 Capsules of Enteric Coated <span class=”matches” style=”box-sizing: border-box; font-weight: bold;”>Peppermint</span> Oil, Treatment for Irritable Bowel S

    5.  Red Marine Algae — sounds strange but a holistic healer friend of the family recommended some things to take when Covid first threatened.  So I did some reading about this and it is a super immune booster, and also one of its benefits is to normalize the digestive system.  My husband and I are both taking it now for the immune boosting factors and I am taking it also for my digestion.  <span class=”matches” style=”box-sizing: border-box; font-weight: bold;”>Red</span> <span class=”matches” style=”box-sizing: border-box; font-weight: bold;”>Marine</span> <span class=”matches” style=”box-sizing: border-box; font-weight: bold;”>Algae</span> 450mg 200 Vegetarian Capsules (Non-GMO & Gluten Free) Supports Joint, Cardiovascular, & Digestive Health, Healthy Immune, Natural Mul

    Yes that is a ridiculous number of supplements to help deal with one symptom of Ofev.  But all together I feel like they are really helping me.  And the Algae and probiotics are double whammies because of the immune boosting, which sounds like a good idea for those of us compromised by lung disease.  I wouldn’t recommend starting them all at once.  Try the probiotics and saccharomyces for a couple of weeks — take them regularly and then start introducing something else if you need more help.Hope you can find some relief and I hope some of this helps!
    Libby Fisher

  • bill-mattila

    Member
    June 30, 2020 at 8:54 pm

    Dear suffering OFEV users. I have been on OFEV for 2.5 years. First year no side effects.

    Now I have them all right down to the rash. Elevated alt and my thyroid test is messed up a little. I take 15omg twice a day I have diarrhea and sickness too. I skip a dose to reset my tract. Will be calling Doctor about my rash and other meds cause sun sentivety. Am willing to put up with sideffects. I take crap meds with the Ofev at times with a anti nausea drug in with it works good but will slow down movements. Coffee bothers my stomach . Ofev has slowed my fibrosis to a crawl. But will get sick to my stomach if I don’t

    Take lifesaver wintogreen is a must as is peppermint oil wiped on my mustache. So good luck every one. William Mattila

  • mike-mses

    Member
    July 1, 2020 at 1:11 pm

    Hi Cindy, all

    I’ve been taking Ofev off and on for the past two years.  (Probably has PF for at least 5 years before that.)  Insurance mandated I switch to Esbriet, but after 6 months they let me switch back to Ofev because of the side effects.  Loose movements and some nausea is common, but some Imodium helps.  My taste has changed dramatically and I do not take the “joy” of eating the way I used to.  If I am have a special occasion, like birthday or seeing the kids, I sometimes skip a day or two just to feel normal and enjoy myself.  I am not advocating this, but it’s the only way for me to cope sometimes.  I do have an occasional beer, wine, or drink.  No one has said not to until I have a transplant.  I have been doing my usual tests this week and will see my pulmonologist on Friday to see how I am doing/how fast it is progressing.  I have my fingers crossed.  I have been evaluated for new lung, but they are waiting until it gets worse before putting me on the list.  I’m 71 now, and if I stay fairly well for another 4-5 years I may age myself out of a transplant.  We’ll see.  In the meantime, if the Ofev slows this down I am all for taking it and putting up with the side effects.

  • Charlene Marshall

    Member
    July 2, 2020 at 1:08 pm

    Hi Mike,

    Thanks so much for sharing your experience with us regarding Ofev. This is such a difficult drug to get used to, and I’ve heard other patients doing what you have done in the past to tolerate side effects for special occasions – skipping the drug for a couple of days – then going back to it. I hope that helps, I don’t recommend either but I’ve had lots of conversations with my doctor about quality of life when it comes to managing side effects of this drug. Good luck with your upcoming appointment on Friday, I hope it goes well! Thanks again for writing 🙂
    Charlene.

  • Charlene Marshall

    Member
    July 2, 2020 at 1:14 pm

    Hi Bill,

    So nice to hear from you – thanks for writing and sharing your experience with us regarding Ofev. It can be such a tough drug to adjust to, so any tips/feedback that has helped others on it, is always welcome. I love wintergreen and peppermint oils, really interesting to hear you find that helpful! Thanks for sharing that, and I hope you can find a solution with your doctor about the rash. Take care, and glad to hear from you… it had been awhile 🙂
    Charlene.

  • susan-howitt

    Member
    July 2, 2020 at 2:02 pm

    I decided against taking Esbriet or Ofev as at my age, (74 this week) and with other serious lung problems didn’t see the point of taking something that may or may not work and at best slow things down a bit, and judging by most that I have read and posts here, I don’t fancy the side effects so have opted for quality rather than quantity, that choice is not for every one I know but suits me.

    Good luck to all those brave souls taking the drugs hope it works for you.

    Cordialement  Sue

  • Charlene Marshall

    Member
    July 4, 2020 at 10:24 pm

    Hi Sue,

    Thanks for writing and sharing your thoughts with us. Most definitely, the anti-fibrotic drugs and their potential side effects are not for everyone and glad you’ve made a decision that is best for you, that is very important. Happy soon-to-be (or belated) birthday this week 🙂

    Take care,
    Charlene.

  • jojo

    Member
    July 12, 2020 at 10:21 am

    I have also had major diarrhea nausea and vomiting.  It was recommended that All Bran be eaten or a supplement. It does help, the sublingual Imodium does help as well.  Vomiting is intermittent and you never know when it will occur maybe once or twice a week. I did go down to 100 mgs twice a day 150 was too much to handle,  it is frustrating but with a bit of experimenting I feel I can stay the course.  As well ginger gravol works for nausea quite well and taste of the tablet almost like a gummy is pretty good! Sure know where toilets are everywhere I go which has not been too many places at all due to Covid my hardest meal is breakfast as I’m getting a bit sick of white toast and egg can not tolerate milk that much and almond milk occasionally only.  Fruit and veggies hard on stomach but if you are going to have diarrhea might as well eat them anyways and enjoy. The excersize part has been tough due to the diarrhea issue but any type of stretching is better than doing nothing.  If I have a place to go the fast dissolving Imodium works great for approximately 2 1/2 hours, Charlene recommended and they do work!

  • Charlene Marshall

    Member
    July 12, 2020 at 5:38 pm

    Hi Jojo,

    Thanks for writing and sharing with us what works to manage the side effects of Ofev the best you can. I know it is such a difficult drug to manage! I also had to go down from 150 mg twice daily, to just 100 mg and keep on that for awhile before going back up to the 150. Had to do this a couple times before my system tolerated it. I’m really glad you hear you’re finding the dissolving imodium effective – I couldn’t believe it when I tried it, compared to the oral tablet. Thanks again for sharing, I am sure this post will help many others.
    Hang in there,
    Charlene.

  • mona-klein

    Member
    July 15, 2020 at 9:54 pm

    Hi Libby Fisher

    Thanks  so much Libby for all the research I will definitely look into some natural remedies that you have suggested.

    I hate take pills I would rather look into the natural remedies so much better than pills thanks again for your help. Mona

  • cherylk

    Member
    July 26, 2020 at 10:11 pm

    Hello Everyone.  I just started on OFEV last week and reading everyone’s comments/suggestions here has been very helpful for me.  I have had GI issues for most of my life and starting on the OFEV was very scary for me.  I decided to go ahead and take it anyway because I am hopeful that it will really be able to help me, and I can always stop taking it if I cannot tolerate it.

    I’m glad I found this forum, as I am fairly new with this disease and even with all the reading and research I’ve done so far, it is better for me to have the connection of those who share what we are going through and not so clinical.

    Thanks!  Cheryl K.

  • thom

    Member
    July 26, 2020 at 10:31 pm

    Hi there Cheryl.

    You’re going to be fine!  Just takes getting use to, that’s all.  I’m probably 18 months.  I have my times of diarrhea,  vomiting occasionally,  mostly mucus.  The hair loss dont bother me.  I’d love to go swimming but just about all the hair I want is gone.  LOL. It didnt affect the nose or ears though!  I still have that!!  But it’s fine with me.  I occasionally skip the ofev maybe 1 capsule a week so I can regenerate.

    You’re going to be fine.  There are many people here to help.

    Be well.

    Thom La Barbera. CT

  • Charlene Marshall

    Member
    July 27, 2020 at 8:58 am

    Hi Cheryl,

     

    So glad you’re finding this thread helpful! Please reach out if you have any questions, lots of really great people on this site to help 🙂
    Take good care,
    Char.

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