- This topic has 63 replies, 18 voices, and was last updated 2 years, 7 months ago by
.
-
Posts
-
-
Hello, I have been on OFEV for 6 months with minimal side effects. Then this month my liver enzyme (ALT) is high and then I got covered with hives. Has anyone else got hives or a rash from OFEV? Dr did not think liver enzymes were high enough to stop meds but then I got the rash and he said hold OFEV for now.
I am wondering if anyone has had a rash then been able to go back on OFEV without problems? Any advice for rash other than the obvious Benadryl? Thanks,
Cindy
-
Hi Cindy,
Nice to hear from you – happy new year! Sorry to hear that suddenly your ALT is high and you’re experiencing a rash from the OFEV. I have heard of this happening unfortunately – both Paula and I believe Al had issues with rashes from Ofev. They stopped it and slowly re-integrated it (if I remember correctly) over a few weeks, is your doctor suggesting this?
Let us know how you’re doing.
Sincerely,
Char. -
-
Happy new year to all. Its been some time since I’ve posted here.
The liver (minus onions) caught my eye.
Ive been on ofev close to a year. Its a brutal drug to deal with. Ive still not figured out what to expect each time i swallow a pill. Im on 100 mg, 150 was too strong.
After the first several months a liver doctor at Yale sent me for blood tests. It was determined i had cirrhosis. Mind you i do not drink. I enjoy a beer perhaps every few months. Just one! A rare glasd of wine. I was told the ofev was the cause and was told no alcohol. Period! I was tested several months in a row. Being who i am i decided i would still have one beer on occasion. What can it do kill me?
I had no rash or other symptoms. Low and behold. The last 2 tests said my liver was fine. Must have been that beer! I told my dr, he was put off a bit, and i get it.
Each time he examines me along with all the testing, i am told that ive apparently leveled off. Breathing is actually better than last year. Im due for a ct scan, it will tell more of a story, hopefully a good one.
I feel fine, but had to stop Pulmonary rehab due to a double hernia, 3 drs refused to fix due to anesthesia, too risky they say. Add to that 2 herniated disks, and a prostate as big as a grapefruit. Radiation and surgery denied.
But. I feel absolutely fine. If i didnt know better id never know anything is wrong. Im 71, was told last year i hsd 12 to 18 months by the first dr i saw. Both Yale and my pulmonologist scoffed at that. Overall i feel just fine. Im glad to be here!!
Thom -
Hello Thom, happy new year to you as well. The body has a dynamic all its own. I am glad you feel healthy. Before my transplant my friends used to heckle me with, “you are in the best shape of your life since college”. I had to lose weight and everything else functioned at a high level other than my lungs. I hope the new year is a stable one for you. Best wishes, Mark.
-
Hi Thom, Thank You for sharing your experience with OFEV. Glad to know the liver enzymes can come back down and that I may get to go back on OFEV. You have lessened my worries. I pray your CT scan comes back better/stable. Glad to hear you are feeling fine and I am glad you are here also! Happy New Year! Cindy
-
Hi Cindy,
Thanks for writing – happy new year to you, as well! Michigan isn’t very far from me, you’re right. It’s even closer to my cottage actually, which is along Lake Huron! Let us know when the rash clears and the next steps the doctor advises. I do know folks who’ve had this happen and can return to using the Ofev. Fingers crossed this is the case for you!
Char. -
I just wanted to share about my side effects after only being on OFEV for just 3 weeks. I had a few of the typical expected things occur, my 1st dose had me momentarily feeling prickling tingles on both arms in the same spot by my elbows, but that passed by nearly as quickly as it occurred.
The shocking, but rare thing come to find out, was going way out of the range for my TSH for my thyroid replacement hormone. I had radiation some 40 years ago due to Graves Disease, and now the OFEV has affected my absorption of the Levothyroxine, leaving me with no metabolism. My lab results were worse than any I have ever encountered.
Turns out a pharmacist researched this for me because no one had any knowledge of this, and in the clinical trials for OFEV, 1% of the participants had this happen with their thyroid levels. The Pulmonologist wants my OFEV treatment to continue and the Endocrinologist isn’t even certain that if I were to discontinue taking OFEV that this situation could even be reversed. That is not an option anyway.
Next matter was the elevated ALT as someone also mentioned. After 2 more weeks, I was retested. The results showed my levels had gone down putting me back in the normal range…at least for this time. We will continue to test for this monthly for another 5 months.
What I read that can help lower ALT which made my day, was drinking coffee. That is something we have been doing a lot of while quarantined for the COVID-19 outbreak. Exercising, losing weight, a healthy diet, reducing high cholesterol, and increasing folic acid intake can be beneficial, as well.
I think the many prayers going out for me, along with lots of coffee has kept me on OFEV! It’s a tricky medication that seems to affect everyone in different ways. Very tricky indeed. Best of luck to all who are on it!
-
-
Hi
I’m 84 years old and was diagnosed with IPF last April. After finding funding for Ofev I started it at the 150 mg dose. After 2 months of it I had trouble even looking at food and had to stay home unless I took immodium. My family said I changed and was very depressed although I didn’t notice it. I stopped it before Christmas because I wanted to be able to be with people. I had lost 8 pounds but gradually felt much better. My hair is now falling out. I am not on oxygen although I could use it while walking. I read all these stories and want to be as successful with Ofev as they are. My dr is willing to restart it but thinks it will be the same thing even on the lower dose. I did all the suggestions. Protein etc. My question is can most people take it and live a fairly normal life? How? Am I the only one who can’t deal with Ofev?
-
Hello Jean, unfortunately many patients have problems tolerating the Ofev. In my opinion you should ask your doctor if you can try esbriet. You may have better outcomes taking this medicine. Many patients try both because of the inability to tolerate one of the other. These two medicines are basically the same but they do have different side effects. Take care and check back in. Mark
-
-
I have now been on Ofev 150 mg 2x’s a day for a month and 3 days and and considering speaking with my Dr. about my side effects. I have intermittent diarrhea, nausea and head aches as well as hair loss. Do you know if I ask my doctor to reduce my prescription to 100 mg if these sides effects will lessen?
Also looking for info. on what to eat to reduce the side effects.
Thank you,
Jane
-
Hi. Dr Don Salzberg here. I’m not a Pulmonologist but I’ve been on OFEV 150 mg 2x/day. My issues with nausea got better (I’ve been on it for 18 months with stable PFTs). I found that one should eat a little bit before you take the AM pill and i always chase it now with Zofran 8mg and have had almost zero bouts of nausea. Diarrhea is also much less that before. I needed to lose a few lbs but my desire to eat is much suppressed. Once in a while i skip a dose but I’m not advocating this. When i do surgery (eyes) i give myself a holiday and take the pill once that day. I know Esbriet has a lit of issues with skin rash/sun sensitivity. I’m a sub worshipper and have not had any rashes. My hair is a bit thinner as well.
-
Hi Doctor Salzberg,
Thank you so much for sharing your experience with me. I am going to start to keep a food journal to better understand the reactions to what I have been eating. I have been so concerned with avoiding diarrhea that I stopped eating salad and many veggies and I am wondering if this has contributed to my hair loss. I do need to lose weight so adding a few carbs was not what I wanted to do but was advised to do so to prevent nausea.
Best,
Jane
-
Hello Jane ( @williesmom )
I read that Peppermint Oil helps with nausea, and I found gum at Whole Foods w/ it. Ginger tea, Chamomile tea, and sipping on ginger ale can help. When my 1st wave of strong nausea hit me, I chewed that gum and drank ginger ale and it went away fairly quickly, thankfully! There’s anti-nausea meds your doctor could set you up with also.
I have read on PatientsLikeMe about patients having their dose lowered due to not being able to tolerate side effects. Your doctor can best advise you on that. My OFEV came with Imodium and I’ve needed to take that twice now and just grinned and beared it at other times due to being home bound by this COVID-19 anyway.
I also resorted to the BRAT diet one day (bananas, white rice, applesauce & toast) to calm things down and that seemed to help. Every day is a new journey as you know.
Not sure how you are eating when taking the med, but I read before I began taking it that if for breakfast you had for example, some scrambled eggs, a piece of bacon, ham, or sausage link, along with an English muffin, pancake, waffle, toast, bagel, or biscuit….and you eat 1/2 of everything, take the pill, then finish off the other 1/2 of the meal, that creates like a sandwich around the OFEV. Quantity doesn’t seem to matter either (like 1 egg, 1 slice of a meat protein, and then a carbohydrate).
A similar scenario is followed for dinner. Many have mentioned that something greasy like Chinese food did not mix well with OFEV so I’ve avoided those kind of meal choices.
As for my hair, OpenDoors advisors have told me that hair loss is not from OFEV but in my case, come to find out, OFEV is more or less causing it because my thyroid medication’s absorption was affected. It’s a rare drug interaction I have. Severe and prolonged hyperthyroidism (high) or hypothyroidism (low) can cause loss of hair.
My pulmonologist ran TSH and Free T4 tests prior to my taking OFEV, and now I get why he did! However, my levels became affected after taking OFEV. As long as I remain on it, the thyroid may remain an issue that I’ll just need to live with since the lung function is more important.
I strongly recommend to everyone to educate yourself about your disease, your medications, tests, and what the results mean because no one will be a better advocate for you than yourself. Don’t hesitate to ask questions and seek answers. Sorry to hear it’s been a difficult time for you.
Oh, and I did read that if you can survive the 1st four months on the meds, your side affects may taper off after that. Everyone responds totally different to this drug which is the perplexing thing. Some experience nothing! Lucky ones.
-
-
Hi Jane,
Thanks for writing – it is nice to hear from you, though so sorry to hear of the unpleasant side effects of Ofev. The 150 mg dose twice daily sure can be tough on our system! It is hard to know if a reduction to the 100/ 2x daily will reduce your side effects, because everyone tolerates the drug so differently. However, I have heard of quite a few patients reducing the dosage and tolerating it a lot better, then slowly working back up to the 150mg again. It’s likely worth a conversation with your physician to see what he/she says.
Hang in there!
Charlene.Jane
-
Hi everyone. I am not on Ofev but reading all your stories reminds me that I keep a container of ginger gums in the glovebox of my boat for anyone who gets seasick and they work. Chewing one is isually enough. Try your supermarket or health food shop. Natural ginger also works but is a bit strong for a lot of palates.
-
-
I have been taking OFEV 100 mg for 3 weeks and am doing better than I anticipated. I normally have a very sensitive stomach, so I was prepared for the worst — stocked up on plenty of Imodium, saltines, gingerale, etc etc. I think because I have dealt with IBS in the past, I might be a little more familiar with helpful supplements than most people who have never had digestive issues would be. Years ago, when we lived near Wash DC, I shopped at a pharmacy near NIH with trained pharmacy techs who dispensed all sorts of helpful advice re supplements for my problems. I think the fact that I’m following that advice now is what has made the introduction of OFEV easier.
1. Take Saccharomyces Boulardii … it is a yeast derived probiotic, the ONLY supplement that got my husband through a very difficult antibiotic induced bout of C-Diff. It is the main probiotic in Floraster, but much cheaper to just buy it from Amazon in the pure form. I have used the Jarrow brand for years. Just one capsule after dinner does the trick. During bouts of diarrhea from IBS in the past I took 2 capsules twice a day. This supplement is a KEY!!
2. Another product I have taken for years is called GI Encap made by Thorne (also on Amazon). It has ingredients like Marshmallow extract, aloe vera gel and others that soothe and coat your stomach lining. Dosage is very flexible depending on your symptoms — 2 pills taken along with the OFEV seem to really help coat my stomach and prevent any distress.
My main symptom is nausea or queaziness. I’m thankful I still have a good appetite, but I have to be careful not to forget that snack mid-morning and mid-afternoon, otherwise I feel like I’m going to crash — no energy, stomachache, etc. Cracker with peanut butter works well, a portion of an energy bar, or part of a banana helps too.
If I think of more helpful hints I will add to this post. We’re all struggling with this and I am so thankful to find all the support and suggestions on this forum. Thanks to everyone!
-
I am wondering how common it is for the OFEV to cause blood pressure to rise? I’ve been on OFEV just about 3 weeks now and in the past 4 days, my BP is going up. It’s the weekend so I’m not going to panic and call urgent care .. .just took some baby aspirin and will contact the doc on Monday. But is this common? My BP has been in a very good range my whole life.
Thanks!
-
Hello Libby, thank you for tips on how to alleviate gastric problems with Ofev. I also went on the Ofev page and high blood pressure is a side effect of the medication. Please advise your physician on your current situation. I have included the link. Take care mark.
https://www.ofev.com/taking-ofev/side-effects -
One more thing to add to my post about preventing or combating diarrhea. My pulmonologist told me to not be afraid of taking the Imodium. She said to start out taking it regularly and then see how I reacted. So for the first 3 weeks, I have taken 1/2 Imodium with each OFEV and it has worked really well for me — no diarrhea at all – – it has not interfered with my being normal either. Now after 3 weeks, I am finding I don’t need that 1/2 tab twice a day, so I’ll experiment with taking it just once a day, or not at all. I am fairly careful of what I’m eating now, but can eat salads so I consider that a good sign.
I guess my doctor’s point was : don’t wait to take the Imodium when you already have a problem. it’s much easier to prevent diarrhea that it is to curb it once it starts.
Also, I am not a coffee drinker (wish I were but my stomach can’t take the acid)… several people have mentioned lots of coffee being helpful for liver function. I do know that lots of coffee can also be laxative, so if you’re having any issues where you don’t want a laxative, it would be best to not overdo the coffee.
-
Hi Libby,
All really good suggestions on how to manage OFEV side effects – they can be difficult if they aren’t addressed proactively like your doctor suggested, and you so nicely wrote about. Thank you! The one thing to note about immodium I’ve found, is if the oral tablet stops being effective for you (I am glad it works for you!), something else to try is the sublingual tablet which dissolves under your tongue. I used the oral immodium for awhile, but then it stopped working for me and wasn’t effective. The sublingual dose is a miracle! The tablets are a little more expensive, but worth it — my Mom is a Pharmacist and recommended this for me. A few other forum members have mentioned they worked for them too when other solutions stopped being effective. Just a tip to remember 🙂
Have a great day!
Charlene. -
Charlene,
Thank you for that reminder about the sublingual Imodium.. Can you purchase it right at the drugstore or Target kind of store? I get the picture from all the various postings that living on these drugs is a constant adjustment process! And everyone’s reaction is completely different and we all have such different symptoms from day to day. Quite a challenge!!
Libby
-
No problem Libby, I am happy to help! Here in Canada, we can purchase the sublingual imodium in a regular drug store, no prescription required so I would imagine stores like Target should have it. Goodluck finding it, it truly was a lifesaver for me, and like you mentioned: a constant adjustment process is a good way to describe managing both side effects of IPF and our anti-fibrotics like Ofev. Take care, and feel free to write any time.
Charlene. -
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
-
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.
-
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 !
-
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)
-
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. -
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. -
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
-
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
-
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. -
-
-
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 S5. 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 -
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
-
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.
-
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. -
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. -
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
-
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. -
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!
-
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. -
-
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.
-
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
-
-
Re the Instant-melts Imodium.. I have searched online, at local pharmacies and at Target and they do not seem to be available in my area, or maybe even in the US at all. I’ve seen British and Canadian websites but even on those sites, customers are lamenting that they cannot find them. Has anyone found them readily available in the US?
Thank you
Libby Fisher
-
Hi Libby,
Oh this makes me sad that they aren’t readily available where you are! These are the ones I try to get (sometimes the packaging is a bit different):https://www.imodium.ca/products/imodium-quick-dissolve
I wonder if Amazon has them or if you can order right off the US-site for imodium? I usually get them at my local pharmacy, not somewhere big like Walmart etc. Not sure if this helps any, and so sorry I can’t offer much insight into the US and finding them there as I am in Canada.
Char.
-
Thanks Charlene… I feel fortunate that I don’t need Imodium every day… maybe 2 days a week. The other days I’m managing okay with the peppermint gels, probiotics and also Pepto Bismol tablets. I have tried Amazon for the instant melts and did not see anything except the regular Imodium.. same thing for drugstores and Target. The only Google hits I see for the instant melts are Canada and UK online drug options. We keep plugging along.. my big hope is that they come up with some other drug that does not have the side effects that Ofev has.. that would make me super happy!!
All the best,
Libby
-
Hi Libby,
I’m also really glad to hear you don’t have to take it every day and other things help you manage the wicked GI side effects associated with Ofev. Can you order off the Canadian Amazon site? If so, the quick dissolve tablets are here:https://www.amazon.ca/Imodium-Quick-Dissolve-Flavor-Tablets/dp/B00EUVAHAS/ref=sr_1_1?crid=31XHFEOCT573B&dchild=1&keywords=imodium+quick+dissolve&qid=1596220416&sprefix=imodi%2Caps%2C572&sr=8-1
Take care 🙂
Char. -
Thanks so much Charlene. We have never tried ordering from another country’s Amazon site.. but it is nice to have this link in case I do find that I need to go that route in the future. For now, I feel like the regular Imodium works well.. I do have a day or so each week where I feel like I’m “on the edge” all day… not a pleasant feeling, as I’m sure you know! Usually I am totally fine the next day.
Stay well.. and thank you again.
Libby
-
Well, here’s the answer re ordering from Amazon.ca — some things may ship to the US but not everything. We tried ordering the product just to see if it worked and it said “this cannot be shipped to this address”. It must be provided by a seller in Canada who does not want to incur the costs of shipping to the US. That’s okay … I’ll make do with my other remedies, but it was worth trying!!
Libby
-
Oh bummer! Sorry to hear that Libby – I wasn’t sure how it worked ordering from a different country and the shipping. I’m glad to hear you aren’t needing it regularly though, and that other things are successful in helping with the side effects of Ofev. I’m glad the oral tablets do work for you too! Stay well and enjoy your weekend 🙂
Char.
-
-
Libby try looking up Imodium Melts in the USA think they might have them under that name
-
I have been on Ofev for nearly 4 weeks, no side effects for 1st week, 2nd week a bit of nausea only, then last week both hit, sickness and diarrohea. I had immodium to hand and they worked and had anti sickness drug which also worked. It seems to come after breakfast and have noticed that eggs and milk seem to start it off. Im hoping the side effects stay manageable. I have to have blood test next week to see how the liver etc are. Its early days I know but keeping my fingers crossed
-
-
Suzy — I have found that having milk (even the lactose-free) with the Ofev made my stomach hurt more. I switched to original Almond Milk and that solved it. Small amount of cereal with plain yogurt and plenty of fruit including banana- – that’s my go-to breakfast. I second Mark’s recommendation for peanut butter…For snacks I often have a couple of peanut butter crackers, or I have peanuts and a handful of banana chips. I’m in the middle of my 4th month of taking Ofev and finding that it hasn’t really gotten easier. The switch from 100 to 150 was tough and the higher dosage definitely makes me more tired and bothers my stomach more. Holding out hope that my system gets used to it…
Libby
-
Re Imodium Melts
Unfortunately the only products available on Amazon are Imodium caplets or gel tabs…both of which must be swallowed. There is no Imodium product that is a sublingual melt, except those advertised by British or Canadian drug order companies. I am suspicious that it has something to do with the recent more strict controls on packaging of Imodium — I knew nothing about it but after finding a bottle of 200 caplets for a very cheap price on Amazon, I noticed a review by a physician which mentioned that it is getting hard to find caplets that are not all foil-packaged to prevent teens from using the drug for some sort of high. So I think that is why the instant melts have been discontinued here.
Libby
-
Wow @travelingnana ,
Sorry to hear this Libby — a bummer you can’t get these in the US due to others’ behaviours and them being discontinued. How frustrating! I’m glad you still have other options that help you though, by the sounds of it. Keeping my fingers crossed the side effects remain tolerable.
Sincerely,
Char.
-
- You must be logged in to reply to this topic.
