[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]

@williesmom

Hi Kathy,

I was so interested to read your note about your physician recommending a fiber supplement to help counteract the diarrhea.  I have had episodes of IBS for a number of years and I used to take fiber all the time.  Since I haven’t needed it lately, I completely forgot that it can be very beneficial to slowing down your digestion and helping form normal stools.

I wanted to ask if your doctor recommended a specific brand or type of fiber?  I just did a bit of reading on the subject and there are so many to choose from and they all use fiber derived from different sources — psyillium, methylcellulose, inulin, etc.

Any help is appreciated.  Thanks so much!

Libby Fisher

[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

 

[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.

[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!

[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]

Thanks for the helpful hints!  I’ll let you all know how it’s going soon!

[Libby]

I will be starting OFEV this week.  Of course I am a bit anxious just thinking about all the potential side effects, but I want to get going on the drug so that I can get into a routine, know what foods work best, etc.  My doctor is starting me out on the lowest dose possible, just 100 mg once a day, to make sure I tolerate it.  Does anyone find that the breakfast dose is easier to tolerate, or maybe the dinnertime dose?  Just curious. The Ofev nurse told me that I would need to eat a HUGE breakfast which I’m not sure I can do.  From reading this forum, it sounds like many of you are fine with a banana, maybe some peanut butter?

Thank you.  Any advice and suggestions will be most appreciated as I start on this journey!!