travel while on ofev

[Renee]

I just made a trip to the Grand Canyon. I was off of my Ofev for 10 days. According to my Doctor it was not a big deal to get off of it because l have no other underlying medical problems. She said if l were on any meds dealing with an infection, that would be a different story.  Overall I am healthy, except for the PF. I am not downplaying this terrible disease but l am not going to let it (and the Ofev) rule what time l have left. The GC trip was on my bucket list and l was determined to fulfill that wish early enough to enjoy doing it.

[joyce]

thanks so much

 

[Kim Morrison]

I was told by my Dr I could take Imodium as directed when I needed. I did that when I traveled out of state for two weeks. It was a life saver.  Also was told by the Ofev pharmacist the same. Just need to be careful and watch for constipation.

[Bruce F.]

Thank you, Renee!  My doctor has also indicated that missing OFEV for me in order to travel or for special occasions is not something I should worry about.  I have no underlying conditions, and I am young-ish at 59, and there is a lot I want to do and need to do that are not compatible with my usual 2x 150 mg. of OFEV each day.

I am apprehensive when I miss even a few doses, despite the dispensation my doctor has suggested.  It is the existential puzzle that will define much of the rest of my life: when is it worth it to me to miss the protection?  Sometimes, there has been no choice: I become too racked with gut problems or fatigue, and just have to lay off for a couple of doses.

Today I am allowing myself a little OFEV holiday in order to be able to join my family for a birthday breakfast, which under the full OFEV regimen would not have been possible.  From past experience, I know I will have more energy and less nausea for the next four or five days back on the meds.

Later this year, I plan a ten-day OFEV holiday for another family celebration.  This winter, I tried to power through with the full OFEV regimen and it went poorly: too nauseated to even sit for meals, exhausted, and of course terribly bummed about the whole situation.  That inspired me (with my doc’s blessing) to experiment with OFEV breaks at moments when I need energy and when I want to join my loved ones for meals and doing the normal things that OFEV does not permit me to do.

So: thank you for mentioning your OFEV break for the big Grand Canyon trip!  I would love to hear from other folks about these and other strategies for living with OFEV.

Best wishes to everyone out there contending with this dynamic.

Best, Bruce

[Sarah Heydel]

I’m 67 years old and my husband and I love to travel. I still haven’t figured out the best ofev regimen for travel but last trip I skipped the morning dose and only took the evening one. I don’t know if that gave me a little protection or not but I felt good and didn’t have diarrhea or nausea the whole time. I do keep immodium and Zofran with me always and use as needed. My doctor was on board with this plan.

[Jill]

My husband took breaks  any time he needed a higher quality of life. Holidays as well as mental health breaks. Did them on his own as needed, maybe three times the 18 months he was in it, each time hoping  it would reset his system so he’d be cured if the gastro symptoms, and that never worked. He finally went of it over the summer and is much happier. He never bothered to ask his pulmonologist beforehand, since he’s felt he should be the one in charge of his quality life, but the doc was always  supportive after the fact.

[Rand O'Brien]

Do you drink milk or use milk products?  I have found they are a culprit, for me, with Ofev.  Using lactic free milk does the trick.  Just something to check out.  I’m a retired therapist and used to work with HIV folks, 20y/o. , back during the days of large “cocktails” and severe diarrhea.  They would take 2-3 Tbl. of ground whole husk psyllium.  It sounds counter to logic, but works!  Check it out, but slowly increase it over a week +.  If it helps, great.  If not, not.

[joyce]

thanks

[Millie]

I have always been a milk drinker and I find that it doesn’t give me any problems with the Ofev. Another PF patient told me the same thing about milk and dairy products. I tolerate them very well with the Ofev. I also find that Metamucil is very effective in helping with diarrhea. It was unbelievable to me but it really works.

[John Kane]

It took me about a year to minimize the Ofev side effects. What helped me the most was giving up coffee. It seems that the acid, not the caffeine, was the major culprit.
Diet wise, tart or sour tastes, not spicy, would bother me. Dairy does not bother me at all.

Took a while to figure all this out but we traveled when we could.

 

[Pauline Korol]

I went off my Ofev for 10 days while traveling through Ontario.  The washrooms are far and few between coming out of Manitoba.  I suffered no ill effects and resumed taking the medication as soon as I returned home. Hope it works out for you. Good luck

 

[Libby]

My husband and I (both in our 70’s) like to travel a lot!  I do not have IPF but have Hypersensitivity Pneumonitis.  I have been on Ofev 2.5 years and think I have a decent routine now for dealing with possible symptoms.  One (which others have mentioned) is some kind of fiber..whatever works best for you.  I take a small amount (1 tsp) of Miralax each morning and it’s easy to travel with because it’s very fine powder so I can pack several weeks worth into one small supplement bottle.  Since I started on the Miralax, my main symptom with Ofev is nausea rather than diarrhea so I still find that I have to go off the Ofev for a few days when traveling.  I am not willing to risk taking it before a long, overnight flight!  And I find that it’s too difficult for my body to deal with jet lag and the Ofev, so I wait about 3-4 days after arriving at our destination, then I resume my Ofev routine.   I also take some kind of ginger …tablets to suck on or something to help with nausea…otherwise I’m just snacking all day to keep my stomach full and that’s not ideal either.  I think we all have to experiment to see what works for our own bodies!

Happy travels to all!

[John K. Grubb]

I took two trips to Europe this last summer while on Ofev.  Here is what I did.

Every time I took Ofev I took a half of an imodium.

Then I carried in my pocket at all times 2 imodium tables, 6 125mg of Gasx, and 3 baby wipes.  Once or twice I had to use the Gas and an imodium tablet.  I would also head to the restroom at the very first sign of possible bowel movement.  Was able to travel by times for 14 days each with minimum of trouble.

[John K. Grubb]

Last March I was diagnosed with IPF and put on OFEV 150×2.  We had 2 European trips that had been postponed due to Covid and rescheduled to July and August in 2022.  At the time I was 77.  What I did when I started taking OFEV is to take 1 Imodium, initially when I took the medicine, and after about a month 30 minutes before I took OFEV.  While traveling I always carried 2 Imodium and a bunch of GasX in my pocket.  Several times I had loose stools or explosions, but I managed to make it thru 2 14 day trips and enjoy myself.

Whenever possible I would have oatmeal for breakfast ( it helps with the constipation caused by Imodium.  I stayed away from dairy products and I probably cut the volume of what I ate by 50%.

[Rkymtn]

I also choose to be.my own master of this disease and how I take the ofev. When I go on holiday, I take an ofev break and am able to enjoy my time without fear of stomach issues.

Headaches are another of my side effects, so it’s nice to have a break from them as well.

I talked a bit with my Dr about this and he was hesitant to say.. ‘take the break’, but it’s my life.

I’ve been reduced to the 100mg which generally works better, but on occasion it does not and I get a day of nausea, diarrhea and just feeling like crap.

[Marsha]

Aloha- I am 62 and was diagnosed with IPF in 2018. I have tried both of these methods. Reducing taking OFEV to once a day and using infant liquid Imodium to control symptoms.Both methods have allowed me to travel with much less side effects.

Recently I did fly on an airplane for the first time since I began using O2. My lungs reacted poorly to air travel even while on O2. I needed to stay where I flew to for a few months before I was cleared to fly home. I was never told that this might be an issue. Since I did not know this, maybe others would appreciate this information. Has anyone else had difficulty with air travel? I often feel like I’m the only one experiencing this life altering disease. Thank you!