[Charlene]

Thanks so much for sharing Dave! I’m glad you haven’t had any adverse/difficult side effects, and that your saturation seems slightly improved, that is great. Keeping my fingers crossed that more quantitative data emerges from others using the extract as well. Thanks for sharing!
Charlene.

[Charlene]

Hi Libby,

All really good suggestions on how to manage OFEV side effects – they can be difficult if they aren’t addressed proactively like your doctor suggested, and you so nicely wrote about. Thank you! The one thing to note about immodium I’ve found, is if the oral tablet stops being effective for you (I am glad it works for you!), something else to try is the sublingual tablet which dissolves under your tongue. I used the oral immodium for awhile, but then it stopped working for me and wasn’t effective. The sublingual dose is a miracle! The tablets are a little more expensive, but worth it — my Mom is a Pharmacist and recommended this for me. A few other forum members have mentioned they worked for them too when other solutions stopped being effective. Just a tip to remember 🙂

Have a great day!
Charlene.

[Charlene]

@patriciadubose

This is a really good discussion topic to start Patricia, thank you for bringing it up! I am still on the pre-transplant side of things, so I don’t have too much to offer about the final listing process. I’ll tag a few folks below who I know have had a transplant, and let’s see if they have any suggestions to share with you. Thanks again!

@mark-koziol
@justme0956
@dennisr13

… any insight you could offer Patricia on the listing process of transplant? Thanks in advance 🙂
Char.

[Charlene]

Hi Patricia,

 

Thanks for writing, though so sorry to hear your husband suffers from this as well. Anything that compromises our sleep as patients with IPF are things we don’t need, as the disease does this enough for us. I wish I had a solution to offer, I think I may ask my physician about this next time I see him and see if there are any suggestions he has. Bob’s suggestion about vitamin D and iron seem promising too! I’ll let you know if I find anything out, and hopefully the RLS subsides a bit for your husband. Thanks for connecting and happy Saturday!
Charlene.

[Charlene]

Hi @deliassen ,

Thanks for bringing this to our attention! I would imagine you’re right, and I’ll connect with our editor-in-chief to see if it needs to be updated to reflect a title with the ‘anti’ removed. It may have just been a typo on our end publishing the article, these things happen but I am really grateful you brought it up. Thanks again!
Char.

—

UPDATE: fixed Denny, thank you for pointing it out!

[Charlene]

@patriciadubose ,

Hi Patricia, thank you so much for sharing this with all of us, though so sorry to hear your husband’s appetite is lost, along with his fatigue when it comes to chewing. What an amazing caregiver you are to whip these up for him, and for them to be high calorie as he needs as well, so glad he enjoys them. My doctor’s always told me how important it is to give our body the “fuel we need to fight IPF” so I’m glad he has this option. Thanks for the for the information on the specific shakes as well! I’ll keep this in mind 🙂
Charlene.

[Charlene]

Hi Bob,

Thanks so much for getting back to us on this and sharing your experience! I am also on a vitamin D prescribed dose (50,ooo IUs) and an iron supplement as well. I may change when I take them, and see if that helps…. good to hear yours are more few and far between. Are you on a prescribed vitamin D dose, or an over the counter amount? I know each person on here on vitamin D varies 🙂 Thanks again for writing and sharing this with all of us.
Charlene.

[Charlene]

Great approach Liam, makes total sense and seems very well thought out to me! Kudos to you for taking control of the aspects of this disease that we can manage. I also think I’ll see how the Apple Watch 6 fares, along with keeping up with software upgrades, etc. That is one downfall I find difficult to manage with Apple devices. In any case, really glad you have something that is working for you. Thanks again for sharing and stay well.
Charlene.

[Charlene]

Hi @mikepapa

 

Thanks for writing back! I have also heard this, and am trying to find credible sources on it to affirm whether or not it is true. Unfortunately a lot of information is swirling the internet right now, including on various Facebook platforms without reliable sourcing. Of course our own experiences, are very telling too and I can assure you I’ll be writing an interesting piece next Thursday that might be comforting to you, and @wendy-dirks as well. I’m curious to learn more about the immunosuppressant use as well, hope to share some insight with you all soon. Thanks again for writing and let’s keep this very interesting dialogue going…. and remain hopeful too! That is very important 🙂
Take care,
Charlene.

[Charlene]

Best wishes to you too @rjshank ! Thanks for writing and I am so glad to hear you’re finding some success with Wei Labs. I know others have written here that they find them beneficial as well, glad to hear it is helping manage your symptoms. Here’s hoping for some helpful research to emerge for all of us!!! I can’t help but hope that will happen too!! Take good care.

Charlene.

[Charlene]

Hmmm…. really interesting article title @mikepapa ! I look forward to reading through this a little more thoroughly tomorrow. Like you, I’ve also been hopeful for some silver lining to emerge from all the research being conducted on COVID, that will ultimately help those of us with IPF or other ILDs. I’m still hopeful — it seems impossible that some sort of new learning will come out of it. The only thing I’m cautious on is that the type of lung damage/scarring caused by COVID seems different than that scarring of an interstitial lung disease (ILD) like IPF. I read that an article tonight, which can be found HERE and was originally published from the Pulmonary Fibrosis Foundation.

 

What do you think?  I still think it is favourable for us that some research will emerge, I just hope it includes information and treatment on fibrosis for ILDs along with COVID. Curious to hear your thoughts.
Charlene.

[Charlene]

Hi Cornelia,

I am also hoping someone can verify this information through a credible source (ie. research, their physician, etc) as I think it would be interesting to know. While I am not out hardly at all, this is something others using a POC should be mindful of. Good idea to resort back to the tanks, as heavy and cumbersome as they are. If you hear any more information on this, please circle back and let us know and I’ll do the same. Hopefully others can too!
Stay safe,
Charlene.

[Charlene]

Thanks so much for the kind words Jerry! Happy to report the fever seems to be a lot less frequent now, and definitely not as high which is good news 🙂 Thanks for writing and keep in touch.

Char.

[Charlene]

Hi Corneila,

Thanks so much for writing and welcome again to the PF forums! I am also a green tea lover 🙂 Something to note, the EGCG Green Tea Extract as cited in this article:  https://pulmonaryfibrosisnews.com/2020/04/21/green-tea-extract-stops-anti-fibrotic-processes-ipf-small-study-finds

… is quite different than regular green tea, a lot more concentrated and targeted from what I understand. Hopefully the side effects are minimum, stay tuned here for folks who are willing to try it and report back on how they’re managing with the recommended EGCG doses of the extract, if interested.

Charlene.

[Charlene]

@jgenesio ,

That is so encouraging, thank you for circling back with your doctor’s thoughts on the NEJM article on EGCG. Although no formal medical training of course, I also couldn’t imagine it causing us harm in trying it so I’m glad you’re giving it a try and will pay close attention to your body and any changes you notice. Please do let us know and I look forward to hearing. Best of luck and thanks again for sharing!
Charlene.

[Charlene]

That’s really interesting to hear Liam, thanks for sharing! I know it is always of interest to forum members to hear of trackers that monitor our pulse ox so I’ll keep this in mind when others connect with me about it. I am also a very happy Apple Watch user, though not sure I can justify replacing my series 5 with the 6 just yet. Do you think you’ll end up purchasing the new series 6 Watch as a result of this feature?

Charlene.

[Charlene]

I hope it will work how you prefer to wear it as well William! Right now the sensor on my watch pressed into my wrist on a pulse point (I think, that is how it gets the heart rate readings) so I’m not sure it will work facing up but it might. Good question to ask if the new Apple Watch does include an 02 reader. I’m really curious to hear confirmation on whether it does or not, as the website was ‘leaked’ information so I am hoping so! Take care and do circle back if you find out anything more on the Watch or other trackers using 02 monitoring 🙂
Charlene.

[Charlene]

Hi Charles,

Thanks so much for sharing your experience with us, though so sorry you experienced an acute exacerbation. My first one was in May 2017 and it was very scary. Im going to read more about the Duncan Protocol, very interesting and I’m glad to hear it stopped the AE. Also happy to hear its back to slow progression and that you can still do most things, good for you for fighting your way back! I know it isn’t easy 🙂

Take care and thanks so much for writing – glad to hear the forums are helpful to you.
Charlene.

[Charlene]

Sounds great Dave, I look forward to hearing! I also hope you have some quantifiable results in the coming months, wouldn’t that be great? Thanks again for sharing and wishing you the very best. Have a restful Sunday 🙂

[Charlene]

Thanks for sharing the contact number with us, Rene! I just replied to your email, but am looking at possibly ordering the extract as well, to give it a try. I can’t see how it would be harmful to us, even if not beneficial, and I like the comments from others on here that their physicians are in support of trying it, or that they’d explore using it if they had lung fibrosis. We’ll see – I’ve been in touch with my pulmonologist and GP almost daily last week, so when he calls this week I am going to explore it with him.

I also think it is a good idea that those on it compile their findings, citing detailed improvements or things they notice after being on the extract. Details are key! Unfortunately, I don’t have the capacity to track this using an excel sheet at this time, but I wonder if someone did? Something worth exploring if someone has the time to compile all the information, please let me know.
Charlene.

[Charlene]

@shawmj

Thanks so much for writing to us regarding this. I don’t have any experience with Hemochromatosis, though have been diagnosed with IPF since 2016. I’d be curious to hear from your physicians too re: the relationship between excess iron and IPF. If you share with them, make sure to share the credible news article which sources a few studies on this topic vs. a conversational thread, they may be more apt to hear about it if credible sources are shown, just a thought. Perhaps they aren’t concerned about the correlation or are unaware. I’d be curious to hear they’re thoughts. Please let us know if you can 🙂

Take care,
Charlene.

[Charlene]

Thanks for sharing all of this information with us Dave! Of particular interest is the comment your pulmonologist made about EGCG and if he had fibrosis, he’d take it. Glad to hear this, and that your order came. Let us know how you make out today (Sunday) if you can, or after a few days of taking it. Will be curious to hear…. thanks for taking the time to provide us with credible links as well.
Sincerely,
Charlene

[Charlene]

@wifeofipfpatient

Hi Sara,

I agree, this is a very valid concern and something many folks have raised through questions. If you contact the 02 provider or manufacturer regarding this question (ie. covid-19 coming through POC) please circle back and let us know. I know many will be curious about this…
Charlene.

[Charlene]

@6whitehorses

Hi Dave,

Thanks so much for sharing this with us and good reminder re: bioavailability. For those of us on the anti-fibrotics and wanting to take the EGCG, we’ll have to figure out a schedule as to when to take it without food to maximize bioavailability. I know it is important to take our anti-fibrotics with food, so it’ll take some planning for the EGCG but certainly manageable. Thanks for the reminder, and for sharing the credible resource of the NCBI article. Let us know how you manage with your first few doses…
Charlene.