Side effects of OFEV

[Charlene Marshall]

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.

[Cindy Sears]

Hi Charlene, Hope you had a great Christmas Holiday and Happy New Year.  I see a Dr at U of M in Michigan. So I am  not to far from you.  Not sure what the Dr. is thinking yet.  I am supposed to call when my rash clears.  I really do not want to go off OFEV so hopefully I will get to go back on it.

 

[Thom]

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

[Mark Koziol]

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.

[Cindy Sears]

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

 

[Charlene Marshall]

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.

[Yvonne]

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!

 

 

[Mark Koziol]

Hello Yvonne, thank you for sharing your experience with Ofev. It’s a complicated medicine that treats every one differently. I am pleased you are tolerating the medicine. I have also read, like yourself that coffee helps the liver enzymes. Take care, mark.

[Jean]

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?

[Mark Koziol]

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

[Jane]

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

[Donald Salzberg MD]

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.

[Jane]

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

 

 

[Yvonne]

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.

[Charlene Marshall]

Thanks for sharing your experiences with us re: Ofev Don! It seems everyone experiences this drug a little differently, so I have no doubts your comment will help others. Thanks for sharing 🙂 Charlene.

[Charlene Marshall]

@williesmom

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

[Miltont]

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.

[Mark Koziol]

Hello Miltont, thank you for the suggestion. I have heard candied ginger also alleviates nausea.

[Libby]

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!

 

[Libby]

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!

[Mark Koziol]

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

[Libby]

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.

[Charlene Marshall]

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.

[Libby]

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

 

[Charlene Marshall]

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.