[Charlene]

Glad to hear your husband is doing better since the original grim diagnosis Sara. That is great to hear and good for him for working so hard! You’re absolutely right — nothing about PF/IPF is black and white! Enjoy camping with the grandkids, and soak up all those memories! Take care, Charlene.

[Charlene]

Thank you so much for sharing this Rebecca, I am sure many will find it helpful – including the review you included! Sounds like many are inquiring about purchasing this product, so thanks again for taking the time to write and share this with us. Keep us posted on how you’re feeling with this new product if you can!
Many thanks,
Charlene.

[Charlene]

@casey

Thank you so much Karen! I really appreciate your kind words, and happy to report that indeed the fevers are subsiding thankfully. I hope you’re doing alright during this tough time. Hang in there! Char.

[Charlene]

Hi Bob,

Thanks so much for writing to us and sharing your thoughts on this topic – glad you aren’t having any issue with specific foods or drink while on Ofev, that is excellent to hear. I agree with you re: taking the medication with food, or right after as well, helps with the nausea. Goodluck with your appointment in June, keep us posted if you can. Charlene!

[Charlene]

Thanks so much for sharing Greg! I’ll keep my fingers crossed that the lack of side effects continue for you throughout the course of using Ofev. Goodluck 🙂
Charlene.

[Charlene]

Really glad to hear that news Piet, thanks for sharing! I am going to look into this the next time I have bloodwork as well. Take good care, Charlene.

[Charlene]

Hi Ginger,

Thank you so much for writing to me and sharing a bit about this topic, although sorry you also deal with fevers and IPF! It’s been bizarre for me, and pretty unexplained but my medical team is investigating it now because they are getting pretty high occasionally. I’ll keep the wet hand towel under the chin in mind, that is really helpful information.

So sorry you were sick with pneumonia earlier this year, are you almost 100%? It takes so long to recover from doesn’t it? I had it in November and it was just terrible. Keep recovering and hang in there, thanks again for writing to me about this topic!
Charlene.

[Charlene]

Hi @renehakkenberg

So nice to hear from you on the forums again 🙂

I know you emailed to let me know you saw the thread about the EGCG extract, but if you need it for quick reference, it can be found here too :https://pulmonaryfibrosisnews.com/forums/forums/topic/egcg-green-tea-extract/

Like you and many other readers, I was surprised about the positive results of this study despite the small sample size. I am looking at options of ordering the extract as well, and would like to get it directly from the cited manufacturer here, Teavigo. Did you order it right from their website?

I wish there was a way to compile the effects of this for those willing to try it. The nice thing about trying it, is there aren’t any potentially dangerous side effects or permanent damage that would arise as a result as it is just the green tea extract. None that I can foresee anyways, though as always my disclaimer: I am not an MD. Let me know if you notice a difference when it arrives! All really good questions to those using it, hopefully folks in the EGCG forum see the questions and can reply if they’ve tried it already.

Take good care!
Charlene.

EGCG Green Tea Extract

[Charlene]

Yes so unfortunately isn’t it Bob? I wish the solution could be bring sealed/unopened packages to an appropriate location like pharmacy or doctor’s office to re-distribute it. Feels like such a waste of money! I’m hoping Thom can find a solution similar to this that is allowed in Connecticut.

Take care, and hope the weather where you are today is as beautiful as it is here.
Charlene.

[Charlene]

Hi @kay-kagy

That is great to hear, thanks so much for sharing… I’m glad your experience was positive with the Ofev Pharmacist was positive too. For those interested, might you be willing to share the link to the product you got and where you purchased it? I know some folks are looking for information on this. Please do keep us posted on how things go Kay, that would be great.

Take care,
Charlene.

[Charlene]

Great to hear Scotty!
I also find the milk substitutes are a little sweeter, including the soy milk I try but not intolerable. I’m glad it seemed a bit easier on your stomach and hope this continues for you 🙂
Take care,
Charlene.

[Charlene]

Hi Sarv,

Sorry I can’t be of more help with this, I had another member contact me about the brand of EGCG extract as well and I couldn’t really find anything consistent. I’d maybe try messaging those on the forums directly who have posted that they have purchased the product and see where they got it and their thoughts on it so far? This is of course very subjective, but I’m not seeing a specific recommendation listed in any of the literature. If you find one, let us know.

Charlene.

[Charlene]

Hello our dear friend @kathleen-greco ,

 

So nice to hear from you! @mark-koziol and I say hello, and warmly welcome you to the forums whenever you have time to write to us. A big virtual hello right back to you 🙂

I share that same struggle with you, as a fellow therapist, it just isn’t in our nature to ask for help but it is important that others remind us from time to time to do so. Sending that gentle reminder to you, and know that we’re here when you need us. Stay safe during these strange times and look forward to hearing from you again soon.
Charlene.

[Charlene]

@scotty

Hi William,

Thanks so much for starting this thread, I was curious to read through all the replies and see what others say as I’ve often wondered about how my body tolerates milk. I am on OFEV also and typically try to reduce the dairy I’m on as I don’t need any other reason for upset stomach/GI issues but I can’t really decipher if I have an intolerance to dairy or not. For now, just to avoid things all together, I’ve switched to an organic soy milk and have been enjoying it.Not sure if this is something you’d be willing to try? Goodluck!
Charlene.

[Charlene]

Hi @prylee ,

 

Thanks so much for sharing this news with us – interesting that your doctor was in support of this, that does sound like good news. I’m glad you shared the news letter with him and he was in support 🙂

 

Let us know what you decide on the clinical trial.

Best of luck!
Charlene.

[Charlene]

Let us know how it goes for you, Joe! Goodluck.

[Charlene]

No problem Regina, I’m glad to hear you’re finding some comfort in this forum as an outlet. I am so grateful for all the patients and caregivers here that share their experiences so willingly. You’re right — IPF can be so isolating in the “real world”. Sorry to hear others struggle to hear about your experience, so unfair and I hope they never have to contend with a chronic illness that they need to share with others! We’re always here for you 🙂

I also am so hopeful that the research, treatment and/or better understanding of ILDs as a result of COVID illuminates something that is helpful for us! Taking in the information with caution, ensuring it is credible and peer reviewed is important, I agree. A wait and see approach is good, I just hope the waiting is too long. Fingers crossed.

Take good care and enjoy your weekend!
Charlene.

[Charlene]

Hi Joe,

So nice to hear from you, thanks for writing! Sorry for the delay in  getting back to you — what a tough few weeks. How are you doing amid the pandemic and isolation?

 

I agree with you that managing this disease sure can be a balancing act sometimes! How are you finding the homeopathic supplement you’re taking? I do hope more research is conducted on the use of iron and fibrotic development. I think it is so helpful for us to know, especially females who often rely on more iron, typically speaking.

Interesting feedback about the heart as well, I know that our RV is often overworked when we have a lung condition like IPF. Did your PF nurse shed any light on whether or not we’re more likely to have heart conditions in association with lung disease? I’m sure this is indeed the case, unfortunately.

 

Thank you for your kind words! I also pray daily for a cure, and hope I am around when that happens… it will be quite the celebration!
Charlene.

[Charlene]

Hi Regina,

Thanks so much for writing and contributing your thoughts on this topic! I also really like how you concluded the post, “the more I learn, the dumber I feel”. Not that I am glad you feel this way, but I am glad I’m not alone in feeling this way! There is so much out there and deciphering through it in terms of what is credible and what isn’t, is so important. I think I’ve read the same article on the iron transport system and am waiting for a credible source to shed light on it. I’ll let you know if I come across anything pertaining to Iron/Fibrosis/COVID. The body sure is a complex system, I agree!
Stay safe.
Charlene.

[Charlene]

Hi Suzanne,

Thank you so much for writing and sharing your thoughts on this very important topic. I echo many of the sentiments you’ve made as well regarding the caregivers in my life! I don’t know what I’d do without them. I am also so thrilled to hear how supportive your husband has been, not just physically but mentally for you as well. This is so important! He also sounds very resourceful, an outstanding guy all around by the sounds of things.  Thank you for sharing — I’m really glad you have one another. Stay safe!
Charlene.

[Charlene]

Hi @alberto,

Dave: turns out PF News did an article on this back in September per our science writers. Check it out:

https://pulmonaryfibrosisnews.com/2019/09/30/blocking-il-11-reverses-lung-scarring-ipf-mice/

[Charlene]

Hi Susan,

So glad to hear the community-feel of small towns taking care of one another, as your supermarket is doing for you. That is great to hear! I use a Vogmask and they aren’t easy to breathe under, especially having it on for a long time with a cannula, but I find it better than nothing. Sounds like you’re taking all the other necessary precautions you can to keep yourself safe. Thanks for writing and stay well!
Charlene.

[Charlene]

@warlock

 

Hi Bill,

Really good idea for the experiment! I’m not sure if those of us with IPF/PF can get “too much” 02, I’ve heard no but I’ve also heard yes, and truthfully always forget to ask my physician about this. Based on the concentrators I have and LPM, I doubt I’d be able to get too much but those with higher litre flows may. Good idea to ask our physicians and circle back.

 

I also don’t let my sats drop below 90, as advised by my physician.

Hope you’re keeping well!
Charlene.

[Charlene]

Hi Dave,

Will do — I’ll connect with the science writers about this, and see if they can produce a PF News article summarizing it. Stay tuned! Let us know what you find out from your June appointment with your physician, this article is definitely circulating various news/social media channels now. Thanks for sharing it.

Charlene.