[Libby]

I have been on Ofev for 3 1/2 years, mostly 200 mg/day. I tried several times to take the 150 mg tablets but they not only gave me nausea and diarrhea but also raised my blood pressure quite a bit!! So I am staying with 100 mg twice a day and the one saving food/supplement I take regularly is fiber. I take Citrucel or Metamucil (or off-brand equivalents) morning and night. The fiber is essential for me. Also eat oatmeal, farro (a very nutritious grain substitute for rice). Plenty of nuts and seeds and salads too. Peanut butter is great for soothing stomachs and providing a filling snack.

Good luck and Happy Halloween to everyone!

[Libby]

Hello everyone,
I have had ILD for 5 years now. I had an endoscopy 3 years ago when my stomach was really acting up (starting on the Ofev!) and a hiatal hernia was diagnosed. My GI doctor said that about 65% of people over the age of 55 develop this type of hernia…so it is extremely common and she did not think (in my case anyway) that it had anything to do with my lung disease. Her practice does not perform corrective surgery for this because it is fairly common for it to redevelop even after surgery. So I deal with a few side effects (more burping is a problem) by taking Pepcid AC 40 mg twice a day. I have increased this over the years…not sure if some of my need for more Pepcid is simply from the Ofev irritation? I do not like how I feel on omeprazole and don’t like the possible side effects so I stick with the Pepcid.
There is one product I have been taking for quite some time that is very soothing to the stomach lining . It is by Thorne, called GI-Encap and is available on Amazon. It helps coat the stomach and I find it extremely helpful. I always take it along with the Ofev. Digestive enzymes can be very helpful too.. my husband and I both started taking them in our early 60’s…digestive issues are so common, doctors can’t always explain the causes, we have to do some trial and error, reading, trying a supplement or two. Good Luck!
Hope this helps.
Libby Fisher

[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!

[Libby]

Hi Carol.  I have not heard of Ofev being related to shifting teeth.  But my experience over the past 15 years (way before IPF and Ofev)  has been that my back molars occasionally move back and then they realign, probably because the wisdom teeth were removed years ago so there is nothing to block the movement.  I have recently had an issue with the back lower molar shifting so much that food got trapped there all the time, so I will probably need to have that crown replaced and get a larger one that fits the space better.  Anyway, my dentist said that teeth shift with age and hopefully your situation is due to natural causes rather than a more worrisome Ofev side effect!

[Libby]

Hi Charlene,
I hope I can help a little with your asthma-IPF question from my experiences. I never had asthma until I had a bad case of bronchitis ages ago, at which time my primary gave me an inhaler. Then years went by with no incidents at all until a couple of years before my IPF diagnosis, I began to have more frequent bouts of bronchitis and with those illnesses came sudden coughing fits that were asthmatic, in other words, I couldn’t stop coughing and was gasping for breath while feeling like my windpipe was closing up. They are really terrifying when they occur! The urgent care nurse gave me Ventolin so I started always carrying it with me. Then when my IPF was diagnosed and I started seeing a pulmonologist, she immediately started me on Ventolin which I use twice a day.

I have found that during the winter the very cold air can trigger some asthma symptoms, so I try not to walk outside here (Minnesota!) when it’s too cold. I also find that my chest and throat do not tolerate very cold drinks anymore..they make me feel short of breath…so no more ice cubes for me!

So I can’t answer your question about whether this combination is considered common or not, but it’s what I’ve got and the doctors don’t seem at all surprised. I find the Ventolin keeps the asthma under very good control..I have only had one or two “breakthrough” incidents. It is handy to use the inhaler before you exert yourself while exercising. I also use the Arnuity Ellipta inhaler for the IPF.

I hope this helps a little!! Best wishes for sunny summer days 🙂
Libby

[Libby]

Hello everyone on Ofev.   I really appreciate being able to read others’ experiences with this very difficult drug.  I started on it last April at 100 mg, then progressed to 150 which I was able to tolerate for about 4 months…only because I took occasional time off to give my digestive system a chance to heal .  But it really never got any easier.  I was taking so many supplements to try to deal with the nausea and diarrhea and acid issues …probiotics, ginger, fiber, anti-nausea homeopathic pellets. Nothing really helped and then I ran into a lot of GI trouble because of taking the Immodium and had to consult with a gastroenterologist. Sorry for the gucky info but we’re all in this together… I never realized that the Immodium was actually causing a lot of stool backup because I was still having diarrhea, so I kept taking more Immodium thinking I’d solve the problem.  It really made a mess of my system!  And then the blood pressure issues started…crazy fluctuations and I have never had high BP.  When I had my checkup in mid-November,  my lung function tests were really excellent (I’ve been doing a lot of exercise biking and power walking)…My pulmonologist said I could try 6 months being off the Ofev altogether.   The 3-5 months I was on the drug definitely helped me recover from months of bronchitis… has anyone posed the question (which I will do when I go back in May) that maybe in milder cases like mine where my oxygen level is fine…could some patients take Ofev for 3-4 months per year, and reap the benefits and then go off it for the rest of the year?

Oh how I wish the clinical trials in the nosespray or inhaler version of a drug would progress rapidly!!!

I’m going to try the honey,ginger,thyme mix because it sounds like it might help with wintertime phlegm and coughing.  Thank you everyone for your input!!

Libby

[Libby]

I wanted to respond to this thread about weighing risks and benefits during covid.  My husband and I (both in our early 70’s) recently flew from Minneapolis to Baltimore.  I had not seen our daughter and her family since Feb and I really couldn’t stand it any longer.  I could tell I was getting really down, not smiling much, not caring what we did during the day, etc.  I have never, ever had a problem with depression but this pandemic is challenging all of us!  At the same time, I happened to read a column by a physician in the Atlantic magazine — he was answering a grandma who was desperate to see her grandkids in Baltimore too!  I was thrilled to read his answer which basically was that it is as safe to fly right now as it ever can be.  I then saw a video showing the cleaning and sanitation process on Delta airlines and we were so impressed, we booked our flights that night.  Our trip was so easy, the plane impeccably clean, passengers seated as far apart as possible (no booking of the middle seat on Delta!!).  Airports are basically empty so no waiting in a crowd for check-in or security.  Oh, and they are boarding from the back of the plane, so no one is going by your seat, wrestling luggage over your head!  All in all, a super easy flight both ways and BOY OH BOY, was it ever worth it to see our family and feel the love…in person instead of on a video call.

We also go out to dinner in our small city neighborhood.  We eat outdoors at separated tables, but we’re not getting out a measuring tape to see if they are 6 ft — I’m thinking they probably are not but it’s so important to treat ourselves.

The bottom line is that we are trying to be as careful as possible, but we are also living our lives.  We shop at the mall, at Target or Trader Joes, etc … everyone is wearing a mask, most people are considerate when they see our silver hair!  We can’t shelter ourselves forever, or even for the next 6 months — it is simply unhealthy for our emotional and mental well-being!

Libby

[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

[Libby]

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

[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

[Libby]

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

 

[Libby]

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

[Libby]

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

[Libby]

I have been taking the equivalent of 600 mg EGCG for over 2 months now.  I chose the NOW brand because it is almost completely decaffeinated and also because it spells out the exact mg of the catechin on the label which was not so  obvious with other brands, especially ones that just call themselves Green Tea Extract.  I am finding confusing information about when to take the dose!  The first hit now when you do a Google search on dosing of EGCG is this from NIH saying that the extract is inhibited if you take it with food.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4665468/#:~:text=Therefore%2C%20ingesting%20food%20at%20the,to%20maximise%20its%20systemic%20absorption.

This was published in 2015 so it’s obviously in need of updating.

There are also studies and summaries I’ve read which warn of dangers of taking the EGCG without food .. particularly the possibility of liver toxicity.  Considering that OFEV is already a really powerful drug to be processed by my liver, I’m really reluctant to take the EGCG on an empty stomach unless someone definitely says that it’s safe.

Lots of confusing information and I’m not a scientist… here’s a study from the EU.   They seem to have concluded that 800 mg is a definite risk for liver toxicity… are we pushing it too close with 600 mg?

https://efsa.onlinelibrary.wiley.com/doi/10.2903/j.efsa.2018.5239

 

[Libby]

@mklein

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 S

5.  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

[Libby]

Hi Thom and Karen..  I am getting my Ofev from Accredo.. they have very good customer service, but I sure haven’t gotten a break of any kind.  I am paying $550 per month …that’s my Medicare co-pay.  The first two months we were in the “donut hole” and had to pay over $2000 per month.  Outrageous is an understatement.  The $550 is tolerable, but still really expensive.  I’ve spoken to the folks at Open Door and also the support people at Boehringer and was told we were not eligible for any help.   My pulmonologist told me to call Boehringer again … she seems to naively think someone will just give us the drug for nothing out of the goodness of their heart.  Maybe it’s worth another call to talk to another customer support person??

[Libby]

Re purchasing Ofev from India:  I did a quick search on the forum site and it brought up our thread a few months ago on this issue.  The posting from Thom indicated he had an Indian doctor when he was first diagnosed who alerted him to this possibility.  Thom, if you are on the forum, would you please offer any additional information .. Are you currently purchasing Ofev from India?  What specific website/company have you used?  Etc. Any help will be appreciated!!

Thanks, Libby Fisher

[Libby]

@krmoeller

Hi Karen,

I am new to IPF and Ofev myself.  I am just starting my 3rd month of being on Ofev.  I can tell you that it’s still really expensive even on Medicare — my copay is just over $500 per month which is outrageous.  We can only hope that some politicians in our future will take on Big Pharma and  their lobbyists and break their stranglehold on Americans … seriously, we are supporting pharma research for the entire world and no one else is paying the prices for drugs that we do to support that research.  It is criminal.

But enough about the general problem.  I am aware of some participants on this forum buying their Ofev from India and being completely satisfied with going that route.  My pulmonologist wasn’t keen on the idea when I mentioned it but my husband and I both think it is definitely worth checking out.  There is a possibility of my entering one of my doctor’s clinical trials in a month or so, which will pay for my Ofev while I’m in the trial.  If I do not enter the drug trial, I will most likely pursue the drug from India myself.

If whoever wrote the posting about getting Ofev from India could please provide more details about how they went about making that contact, it would really help those of us who do not qualify for any financial support.

Best of luck to you Karen as you start on this challenge.  Keep in touch!

Libby Fisher

[Libby]

Re waiting 12 hours between doses of Ofev : I wanted to pass along the guidance given by my previous pulmonologist at the U of MN (she is head of dept, a researcher and professor so I really trust her analysis and advice). She said the 12 hour time span between doses of Ofev is not absolute at all. There is flexibility and I find my evening dose is usually about 10.5 or 11 hours after the morning dose. She said the most important thing is to take the Ofev during a meal or immediately after finishing…do not wait! Make sure your Dad has protein to carry him through and definitely some carbs to absorb the med. I often have a graham cracker or similar in between meals and before bed, a small glass of milk helps too. I haven’t found the need to eat the enormous meals that the Ofev reps recommend either. Just my normal meals with good common sense about nutrients. Hope this helps a little!

Best of luck!

[Libby]

I have been on two inhalers since I was diagnosed with IPF .   I really appreciated Richard Shelby’s explanations (which my pulmonologist is terrible at).  I take Arnuity Ellipta inhaler and also Ventolin once a day.  Once in a while I have an asthmatic-like response to coughing or an irritant in my throat and need to use the Ventolin on the spot, but I don’t consider myself asthmatic. The Ventolin reaches all the way down to the tiny bronchial sacs and relaxes them.    The Arnuity Ellipta is used for COPD, ILD, IPF and probably other diseases.  I don’t like using steroids anymore than the next person, but I think Richard says it all — we’re dealing with scarring which causes stiffness in our lungs.  The inhalers help relax everything and help us breathe more deeply.

This should probably be another topic but if anyone is interested in working on their breathing capacity and endurance, I am working with a device called PowerLung.  You can adjust the resistance on inhale and exhale and gradually work up to harder levels.  It is purchased directly from the company online.  $120.  Not cheap but way better than the small breathing devices available on Amazon or hospital/rehab ones.  It is available in a range of easy to difficult devices, from couch potatoes to endurance athletes.  I highly recommend it!

[Libby]

Sorry, I forgot the last question you asked about remedies…  A lot of people recommend the neti-pot or neti-squeeze bottle to flush you nasal cavities with a sterile saline solution.  I never found good results and it often made my ears more clogged.  I have found a natural nosespray on Amazon that really works!  It clears everything.. if your throat clearing is the result of post nasal drip, this should really help. Clear Revive nasal spray…a bit of a menthol sting at first but then after a few minutes, you can really blow your nose well and clear out the “gunk”.  There are many options on Amazon for natural nose sprays… some are available in drugstores like the Bio Allers one for sinus/allergies.  A basic saline spray can be used like a neti-pot but it’s a lot simpler ..just spray generously in your nostrils…do lots of sniffing and then blow well.

https://smile.amazon.com/gp/product/B01K8FBV3Q/ref=ppx_yo_dt_b_asin_title_o02_s01?ie=UTF8&psc=1

I’d love to hear how you’re doing in a couple of weeks…we who live in cold climates can look forward to Spring really arriving!!

[Libby]

I am going to go with Jean-Michel’s philosophy!!   I never drank much at all until my 50’s and haven’t had hard liquor since college.. no going to martini bars for me!   But my husband and I LOVE wine and derive much pleasure from sampling different types of Italian and Portuguese wines (mainly because those countries are our frequent travel destinations) , drinking a glass  before and during dinner each night.  Even though we are both retired, it is a wonderful way to say “okay, chores for the day are done, and it’s time to relax”.   I think wine’s benefits to our moods and to our overall feelings of well-being are more important than any should’s or should not’s.  Red wine is an anti-inflammatory… I don’t know if my achy muscles and joints know that for sure, but I do feel better and it’s better for me than taking an Ibuprofen! One thing I do know is that it adds a few pounds around the waist because alcohol is mostly carbs.  Most yummy, pleasurable things in life have a trade-off.  I’m sticking with the wine and the pounds… I’m a 7-time grandmother, so a little wine weight is okay with me :-))

[Libby]

Hi Charlene,

I have had problems with dizziness for a long time.  Sometimes I get the Benign Positional Vertigo where I can’t turn my head quickly… I perform the Epley maneuver a couple of times which gets the offending crystals to reposition themselves in the ear canal.  I think BPV is one of the most underdiagnosed causes of dizziness and it can be corrected if that’s your problem.

But mostly, I just experience dizziness.  I went through all my medications and found that most of them carry warnings about dizziness.  One is Mucinex, so now I wait and take that after I’ve had a good breakfast which also helps prevent the nausea that it was causing.  I also find that the proton pump inhibitors (Prilosec, Nexium) and even a larger dose of Pepcid AC (suggested by my gastroenterologist) all contribute to dizziness.    Some days I can’t exercise in the morning because I get too dizzy…it seems better in the afternoon.  My blood pressure seems fine so I really can’t pinpoint a reason.

I have also had a lot more sinus issues and headaches now that winter is officially here.  Keeping the house humidity at a comfortable level really helps.  Occasionally I take a decongestant if I feel too stuffed up and dizzy.  Lots of tea and water too.  It’s quite a balancing act, right?

Good luck to everyone… .
Libby Fisher

[Libby]

In reply to Carol Rubin,

I’m sorry to hear you’ve joined our ranks…no one wants that diagnosis of IPF!!  I started on Ofev last April and went through the same channels to try to gain some kind of financial support. My pulmonologist was just certain that the drug company would practically give it away if I only asked — not sure what planet she was on at the time!! The bottom line seems to be the same as for college applicants — if you make a LOT of money, obviously you’re okay — if you make a low to modest income, you might get some financial support — if you make a nice living and have put away a nice retirement account, you qualify for zero support.   Our monthly co-pay was $550.  If you add up a couple of months like that, you could take a nice vacation, right?

I am now on a 6 month “trial period” without taking Ofev…my lung function tests  were quite good at my visit in Nov so I had dropped back to the 100 mg dose, hoping it would be easier than the 150 mg on my digestive system.  No luck — same old issues of nausea and diarrhea.  I am thoroughly enjoying this period without the drug, but time will tell come May when I go back in for testing.  I guess none of us knows how slowly or rapidly our disease will progress.   I am still using the Arnuity Ellipta inhaler and extended release Mucinex.  I also have a couple of small devices which can help with breathing exercise — one provides resistance, the other provides a fibrillation effect when breathing out so that stimulates the phlegm to loosen.  I’m happy to provide links to either of these if forum users are interested.

Good luck Carol!  We all need it with this disease.  The most important thing for me has been to step up my fitness as much as I’m capable — more time on the exercise bike and outdoor walking as much as possible (hard to do in my location in the winter!).    Any type of cardio exercise really helps to make coughs productive and to clear out the lungs.  Plus I just feel better afterwards.

Happy New Year to all

Libby Fisher