Split Ofev doseages

[Rene Hakkenberg]

Hi Bob, first of all I am not a doctor. I have been on Ofev off and on for over 3 years I tried many combinations of dosages. At times I had to completely stop taking it to give my stomach a rest. I am now on 2×100 mg daily and it appears that I can tolerate it. I think that there is nothing wrong with taking one 150 and one 100 mg. I just never had the 150 but if I did I would try it like you suggest, one 150 and one 100 and see how you tolerate it.

[William Kim Burnett]

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

[Susan o]

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

[Vance Elliott]

I was diagnosed with ipf Jan 2019. Started 300 MG ofev for 6 months. Liver couldn’t handle it. Been on 200 MG since. Can’t do greasy or milk with lactose. Constant roller coaster with digestive system, but able to keep under control with diarrhea meds most of the time. Avg a 3 to 5 day holiday about every 3 months. GREAT news is that the ipf is completely stable now for 4 years +. Oh, I am 78 and still pretty active on a daily basis. Still waiting for a new break through. Good luck to all.

[Larry]

Is whole milk a problem if you don’t have a problem with Lactose?

[Bruce F.]

H Vance—

Congratulations on the stable lung reports!!  I really hope you can stay on the 100 mg. dosage twice a day to keep it going.

Your question, and the great success you’ve had protecting your lungs, reminds me of how worthwhile it is to remain on the medicine.  I’ve been on OFEV for IPF for a year and it is a daily struggle—and your good news reminds me that the medicine works.

I am not a doctor, but I have recently found a helpful tool for helping me with some of the side effects of the OFEV.

I have recently found that I do really well with Fairlife milk, including their chocolate milk (yum!), when I drink 12-16 oz. of the milk as I take my OFEV, especially in the morning.  (Evenings are easier because I usually eat dinner before my dose.). Fairlife is lactose-free, rich in calories, and fortified with enough protein to allay the extreme nausea I often feel when I am in that food averse, food deprived state that many OFEV patients will find familiar.  I find I need to add considerable fiber to my diet to avoid constipation when I drink this milk, but the nausea I so often feel while taking OFEV has abated dramatically.

I struggle to eat in the morning, but I can enjoy the Fairlife milk and a vegan protein fruit smoothie with oat milk.  These drinks provide plenty of protein for me to handle the OFEV, and since I’ve hit upon this routine my nausea during the day is usually low enough to manage.

I rarely eat lunch or other solid food during the day, though I will occasionally be up for a snack.  In the evenings, I usually am able to eat a decent dinner, thanks in great part to cannabis edibles.

Sorry  this response was long, but I hope there is something in here that helps you and others.

Stay strong!  All the best, Bruce

[Millie]

I’ve said it before and I’ll say it again—-try taking Metamucil. It bulks you up and relieves the nasty diarrhea. I was told to do this by my gastroenterologist and it really works. It is not only for constipation.

[Amy]

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

[Amy]

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

[Mary Susan Satterwhite]

I Take 150 mg every 12 hours and I hate the constant diarrhea and weakness, but i do breath better so I do it…I am meeting with the transplant team this Friday so will see how that goes..

[Donald Salzberg MD]

Hi Bob

I am a physician but I am careful to “give medical advice here.”  I’m on OFEV 150mg twice a day. I am a huge fan of Zofran if you suffer from nausea (typically hits 2-3 hours after taking the meds)!  I take OFEV after I’ve eaten something. I have tracked my diet (you’d all cringe) and there’s no real correlation. Diarrhea can be bad for a few days and then is gone. I have purposely not taken the second dose when I’m suffering with GI issues but I’m not suggesting you do that. I’ve done that over the past 6-12 months and in the short run my PFTs are stable. I don’t feel i breath better (day to day) if I take both pills QD (every day) but in the long run—I suspect it’s better to take as much as one can tolerate. I’m not sure 250mg a day (instead of 300 mg) will make a huge impact either way.

[Mack]

Dr. Salzberg

Do you think two of 100 is as effective as the 150 two times a day ?

My doctor reduced my does because of severe diaarhea. The 150 stopped my couch and helped my breathing. I hope the 100 will work as well.

 

Thanks

[Donald Salzberg MD]

Hi Mack

Thanks for reaching out. As an Ophthalmologist and not a Pulmonologist I have to be careful on that answer. The studies used 150mg 2x a day. For sure side effects go down with lower dose. Diarrhea with OFEV seems to ebb and flow (pardon the wording!!!!!). Have you used Immodium or an equivalent? I had nausea issues and found Zofran to work well. Taking after a meal also helps. If the diarrhea subsides on the 109 mg 2x a day—if you still have some 150 mg tablets—consider alternating 150/100 and see how you do. Maybe you can then work your way back to 150 2x. My pulmonologist truly feels OFEV is the better drug. This IDK. These drugs are meant to reduce the acute exacerbations so lower dose for you may work just as well as a higher dose for someone else. Can i ask what your BMI is? If you stay on a lower dose then it would be a good piece of mind to get PFTs done maybe 3x a year instead of 2x. Switching to Esbriet may be helpful in your case but from what I’ve read Esbriet has a higher diarrhea rate and issues with skin rashes (I am a sun worshipper). I hope this helped. Don Salzberg MD

[Mack]

Thanks for your reply

I tried everything for my diarrhea and nothing worked at all.

Sorry but I don’t know what BMI is.

My new doctor at UT Southwest Medical In Dallas, Texas has me scheduled for a PFT in three months.

I weight 150 pounds so I don’t know if the 150mg was just too much or not.  I just hope the the 100 works as well as the 150 did.  Thanks again and i look for to your reply at you convenience.

Meredith

[Donald Salzberg MD]

BMI is Body Mass Index. Over 30 is considered obese. If you weight only 150 you likely have a lower BMI so that will give you more favorable lung study results. So it may be appropriate that 100 mg 2x a day can be as effective as 150 2x a day but i would ask your pulmonologist that. I wish we all could look into a crystal ball to get a sense when your lungs will worsen. Are you on supplemental oxygen? Are your PFT tests relatively stable?  The reality is you will not know whether the 100mg works as well. These meds do not help you “feel better” or “breathe better” today or tomorrow. It’s whether they can slow this progression down over the next 1 to 2-5 or 10 years from now. In theory we all get worse. It’s a matter of how quickly. Maybe we will be lucky??  I’m 67. If it goes real slow i may ultimately be too told for a transplant. One day at a time. I’m grateful I had a great day today. Keep me posted

Don Salzberg

[Earl Robinson]

I’ve been on Ofev for going on 3 years. I started on 150mg 2Xday and my doc had me get blood sample 3 times annually to check my liver function. At one point he suggested going to 100mg due to the effect the Ofev was having on my liver. I take an imodium tablet every other day and eat a meal with the Ofev so I have no serious digestive track issue.
Wishing you all the best and learning we just have to slow down and take longer to do anything. I’m on 10L of O2 during the day and 6L at night.

[Michelle Johnson]

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

[Duncan Fowler]

I also had been having lots of diarrhea for the years that I have been taking OFEV 150’s.

My doc suggested that I might want to go to the 100’s but, I was concerned I might lose ground as far as my IPF went.  She did give me an Rx for 100’s, and I had lots of 150’s leftover.  Rather than waste the 150’s, I decided to take a 150 in the morning and a 100 at night.  I have been doing this for three months now.

That has worked really well for me.  Now I rarely need to take an Immodium because of stomach upset.

Dunc

[Duncan Fowler]

And, it has turned out that my insurance company continues to support my use of OFEV no matter what the dosage  Each month I get 30 150’s and 30 100’s.

[Bruce F.]

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

[Donald George]

I was able to take a 150 at night and a 100 during the day. Stopped the diarrhea. The problem was the insurance company will only do one or the other so.. now I’m back to 100 twice a day. this is my second year on Ofev.p

[Patrick Coghlan]

Interesting discussion.  I’m about to start OFEV in a few weeks so it’s definitely something I’ll ask the pulmonologist about if I start having issues.

[Manzurul Khan]

I started OFEV in late January (2 100 mg capsules a day). After 30 days, I went to test my liver functions. Altought I had no GI issues, my liver enzymes shot by 50% in 30 days. I immediately cut down to 1 a day and will test again soon. I am concerned about the medicine damaging my liver. If the enzymes come down to a number within the range, I am thinking of taking 1 150mg a day. Anyone here doing that? I am also curious if my body weight and height has anything to do with it. I am 5’5″ and weigh 140 lbs.

[Millie]

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

[Yvonne]

Hello Millie

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

[Millie]

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

[J L LaBrack]

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

[Millie]

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

[Mike]

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

[Jim]

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

[conni]

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

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

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

conni b

[John]

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

[Carmen Quintas]

Hi,

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

Thank you

[Carmen Quintas]

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

[José]

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

[harold cheatham]

I have been on OFEV 300mg for 18 months. I’m tired of feeling bad most days. I have nearly a 3 month supply of 150 mg pills. I am wondering if I can safely take a 150 at night and then CUT a 150mg in half to take 12 hours later. I would then theoretically be at 225 mg per day. Has anyone here tried this?  Any input will be very much appreciated!

[Bruce F.]

I have read that OFEV should not be cut. Call the doc or the pharmacy to check me and good luck!

[Millie]

When I first started Ofev last year I took 100mg twice a day. Then I moved up to 1 150mg in the am and 1 100mg in the pm. No side effects. However, my pulmonologist told me that the trials were done on the 150mg twice a day. So I moved up and when I did had the diarrhea and upset stomach. I still have diarrhea—-some days are better than others. I take immodium for it and it helps.

[Suzanne]

I was diagnosed in the fall of 2021. I’m pretty sure I was dealing with IPf for months prior to the diagnosis.  I started taking OFEV shortly thereafter, 100 MG, and dealt with a lot of diarrhea, fatigue and headaches.  My pulmonologist switched my dosage to 150 MG, but after a few months I had to  dial back to 100.  I don’t know if it’s the medication or the pulmonary fibrosis, but I feel just plain crummy most of the time.  I recently discontinued the medication for about 6 weeks as I am having surgery in July for diverticulitis.  The medication causes so many issues with the colon I thought it would be best to settle things down before surgery.  Plus, I was hoping I would feel better not taking it.  Still don’t feel well, but do have some good days here and there.  I am not looking forward to going back on the OFEV, but pretty sure I will as I want to do whatever I can just slow the progression.  By the way, I’m 75 years old and felt amazing before all this.  I rely on my faith to keep me going.  My best to all the dealing with IPF.

[conni]

as some participants have noted most doctors will not do anything other than what BI or FDA tells them. I do believe some of the people have doctors who recognize that we do know our own bodies and tell you to follow that. Most do not know enough about our disease to even understand what we are asking them. the healthcare here in florida for sure is to follow whatever medicare says,little interest in really helping or even suggesting something. Very unlike the doctors at Innova in Northern Va. who were full of ideas and suggestions. If your doctor doesnt make you happy find another one! You are paying them for a service,keep asking questions.
Conni

[conni]

as some participants have noted most doctors will not do anything other than what BI or FDA tells them. I do believe some of the people have doctors who recognize that we do know our own bodies and tell you to follow that. Most do not know enough about our disease to even understand what we are asking them. the healthcare here in florida for sure is to follow whatever medicare says,little interest in really helping or even suggesting something. Very unlike the doctors at Innova in Northern Va. who were full of ideas and suggestions. If your doctor doesnt make you happy find another one! You are paying them for a service,keep asking questions.
Conni