[juzretired]

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

[juzretired]

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.

[juzretired]

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!

 

 

[juzretired]

Hi Charlene

Yes, I am a part of a patient registry by way of the University of California Davis Medical Center because I signed up to be a part of their research.  I figured if by doing so that I could help in any way, it was a good idea.

My genetic testing results came back that my ILD is hereditary and so I’m being put on OFEV.  No one has ever discussed any research based findings with me relative to prognosis predictions, or for that matter MY own prognosis has never been discussed with me.  I believe I am in the early stages of the disease based on my overall health still.  My O2 levels are holding in the 90’s with very little assertion shortness of breath.  I’ll let you know if this topic ever comes up.

[juzretired]

I’m new to this site and have info regarding the topic of OpenDoors patient support program that my pulmonary doctor had me sign up for.  Maybe this will help someone.  My best to us all who are struggling with this terribly unfortunate medical condition.  Keep up the good fight!
https://www.ofev.com/support/open-doors