jaime L manriquez

Hi @earl,

Thank you so much for taking the time to share this information with us! I have no doubt it will help others, and I’m really glad to hear you don’t have any side effects from the Tyvaso or Ofev. Take good care, Char.

Hi @marianne,

That is so brutal, I’m so sorry you’re having these struggles with the oxygen company and POCs. Unfortunately, I’ve heard of this happening often for patients and it’s not fair. POCs are expensive here too, I ended up just buying one out of pocket because I was so irritated dealing with insurance coverage, prescriptions, etc. I hope…[Read more]

@casey

Thanks for writing, it is nice to hear from you 🙂

I completely agree that everyone has ‘something’ they’re dealing with that we may not be aware of, including the things you listed. In addition to their response often being “I’m fine, thanks” as a cover-up, I think our society is really good at also glorifying busy to cover up the…[Read more]

Hi Wendy,

Oh good, I’m glad the forums are back letting you post. Sometimes they can be so finicky!

No problem at all re: sharing my experience with cyclophosphamide. If you have any more questions, please don’t hesitate to connect, and I didn’t lose my hair! It thinned a little bit I’d say but I didn’t lose it.

I hope the visit with the 02…[Read more]

Hi @dongraybill

It should be fixed! We’ve been tracking the things that cause posts to be ‘snagged’ and held as suspected spam and we think we’ve worked through most of those. We are discouraging people from typing a response into a word document then copying/pasting it into the forums though, as this still tends to end up with some weird…[Read more]

Hi Randy,

Sorry for the delay in getting back to you on this topic, but thank you so much for writing and sharing your thoughts with us on Hope! I agree with you, this is something we all need to hang onto and find, no matter how difficult that might seem. I appreciated hearing your perspective on this, and your reflection on when you were first…[Read more]

Hi Don,

Thanks so much for writing and sharing your thoughts with us on Tyvaso. While I don’t have a medical background to back this up, or any scientific proof; I just have a feeling that an inhaled substance is going to be what ultimately helps all of us with this awful lung disease. Just a sneaking suspicion!

When you’ve had a chance to speak…[Read more]

Hi Ben,

Thank you for sharing your experience with Tyvaso! I don’t know anyone who is personally on it, so hearing these stories from our forum members is really helpful. That said, I’m sorry you’re experiencing the lung burning side effect and inflammation, that must be really unpleasant. Are you on the Tyvaso for just PH or did your doctor…[Read more]

Hi Pete,

Thanks so much for sharing this information regarding Tyvaso. I wouldn’t qualify for the trial, you’re correct, as the age would disqualify me but I’ve been keeping an eye on it for the many IPF patients I love. It looks as though it is being evaluated for patients with IPF-only whereas it was previously used for those who had PAH and…[Read more]

Hi @marianne

Thank you for the update on your POC. Unbelievable that the oxygen supply company had to “agree” with the Pulmonary doctor that you would qualify for a POC – very frustrating. Fingers crossed you’ve received it and the adjustment to the device is going well. I use my POC most often, so if you have any questions, please don’t hesitate…[Read more]

Hi @wendy-dirks

Thanks so much for sharing with us, though I am so sad to hear of this experience. A sudden onset of breathlessness, drop in 02, change in PFTs etc are all signs of an AE based on my understanding. In May 2017, I had something similar but I’d been sick for 4-5 days beforehand and things got worse really quickly. I also was put on…[Read more]

Hi @sabrina,

Welcome to the PF forums, though I’m sorry to hear your Dad is dealing with this cruel disease. There is an extensive amount of information on the forums about laser. Please utilize the search function from the homepage (pulmonaryfibrosisnews.com/forums) and it will be at the top right-hand side of the page. If you type in “laser…[Read more]

@obleek,

Thank you so much for sharing this information with us! I have no doubt it will help others. Great news you’ve remained stable, thanks again for sharing.
Charlene.

Hi Mark,

Thanks so much for writing us about Ofev. Have you started it yet and how is it going? I was on this drug too and was really discouraged at first due to the GI side effects. I had to go off it twice and then titrate back onto it, starting at 100mg twice daily and then going back up to 150mg twice daily before I could tolerate it. It was…[Read more]

Hi Don,

Thanks for writing and contributing to this thread. As always, it is nice to hear from you! There have been a few forum threads of people discussing non-respiratory symptoms of IPF. You can likely find some if you use the search bar on the left-hand side of the forums homepage; you’d just have to type in something specific. I know some…[Read more]

Thanks for sharing that Paul. I would imagine that is more common than you think!
Take care 🙂
Char.

Hi Paul,

Thanks for sharing your thoughts and kind comments on how the posts on this forum have been helpful to you. That is what we strive for, and I truly believe we have the most amazing, helpful and generous people on this site, but of course I am bias 😉 .

I will also keep my fingers crossed for you that you don’t need 02 for a long time!…[Read more]