Pulmonary Fibrosis News Forums | Luke R Matthews | Activity https://pulmonaryfibrosisnews.com/forums/members/luker/activity/ Activity feed for Luke R Matthews. Wed, 15 Apr 2026 03:46:40 -0500 https://buddypress.org/?v=2.20.0 en-US 30 hourly 2 7d4b393f788144233fe480c839aa70f5 Luke R Matthews replied to the discussion Help for High Oxygen User Nasal Pain in the forum Using Our Forums https://pulmonaryfibrosisnews.com/forums/forums/topic/help-for-high-oxygen-user-nasal-pain/#post-30921 Tue, 01 Feb 2022 20:24:31 -0600 Reply to Help for High Oxygen User Nasal Pain

Robert, my DME company gave me  a bottle which is filled with distilled water that straps on top of the concentrator and the O2 goes into that and then the tube to the mask comes out of the side of the bottle.  I am glad you found the Oxymask beneficial to you.

]]> afb92ba5d3cb57edc226bd391d9323a5 Luke R Matthews replied to the discussion Help for High Oxygen User Nasal Pain in the forum Using Our Forums https://pulmonaryfibrosisnews.com/forums/forums/topic/help-for-high-oxygen-user-nasal-pain/#post-29163 Thu, 08 Jul 2021 19:34:51 -0500 Reply to Help for High Oxygen User Nasal Pain

If anyone dislikes their cannula as much as me, then I want to share my discovery for a replacement. A Canadian company makes an open air mask called Oxymask. It works with a delivery 1-15 liters. You can go to YouTube and search oxymask to see a short video. Or search Southmedic.com. My DME company gave this to me when I told them how must… Read more

]]> 038235cdf8e987229f43ab6bc15f2e99 Luke R Matthews replied to the discussion Skin Irritations Caused by Oxygen Cannulas. in the forum PF Life: 50+ https://pulmonaryfibrosisnews.com/forums/forums/topic/skin-irritations-caused-oxygen-cannulas/#post-29035 Tue, 29 Jun 2021 13:18:17 -0500 Reply to Skin Irritations Caused by Oxygen Cannulas.

If anyone dislikes their cannula as much as me, then I want to share my discovery for a replacement. A Canadian company makes an open air mask called Oxymask. It works with a delivery 1-15 liters. You can go to YouTube and search oxymask to see a short video. Or search Southmedic.com. My DME company gave this to me when I told them how must… Read more

]]> bad8f6c03a72622c58ba87d6cc4c6f66 Luke R Matthews replied to the discussion Auto Immune in the forum Using Our Forums https://pulmonaryfibrosisnews.com/forums/forums/topic/auto-immune/#post-28971 Tue, 22 Jun 2021 19:25:46 -0500 Reply to Auto Immune

https://www.frontiersin.org/articles/10.3389/fmed.2019.00209/full

i found this article to be of interest.

Luke

]]> aab2e96e0c86f2d82b68a3ce76526b14 Luke R Matthews replied to the discussion Auto Immune in the forum Using Our Forums https://pulmonaryfibrosisnews.com/forums/forums/topic/auto-immune/#post-28916 Fri, 18 Jun 2021 00:01:39 -0500 Reply to Auto Immune

Hello John and All,

Autoimmune disease can cause scarring of the lungs (pulmonary fibrosis).  NSIP with autoimmune features is one such diagnosis. I was diagnosed with IPF in September 2018 and put on Ofev and then esbriet. My sister has IPF as well. She went to an academic health facility for a stem cell research study. We had both been… Read more

]]> 13feda9097db554c228bb016ac9a1070 Luke R Matthews updated their profile https://pulmonaryfibrosisnews.com/forums/activity/p/25844/ Wed, 03 Mar 2021 22:11:47 -0600 0 af926f319ab8cf7ec2d63950aa5053bf Luke R Matthews and Carlo De Pellegrin are now connected https://pulmonaryfibrosisnews.com/forums/activity/p/25840/ Wed, 03 Mar 2021 21:56:17 -0600 0 343fee9455cbf990c0c25313bf6b53da Luke R Matthews posted a new activity comment https://pulmonaryfibrosisnews.com/forums/activity/p/25715/#acomment-25831 Wed, 03 Mar 2021 13:43:10 -0600 On 10 Feb 2021, at 20:56, Luke Matthews wrote:

Dear Dr Adira

I am a lung patient of Dr Lobo at UNC Health pulmonary clinic Chapel Hill, NC USA. I have been diagnosed with NSIP with autoimmune features causing fibrosing of the lungs. I saw an article on your work with EXO-CD24 and wondered if it might be helpful to ILD patients.

I know… Read more

In reply to - Bob posted an update Just read this article from the Tel Aviv Ichilov Hospital researcher Professor Arbor. A new coronavirus treatment being developed at Tel Aviv’s Ichilov Medical Center has successfully […] ]]> 1c2462fc7b5ac4d9c7c8bf604091f1f1 Luke R Matthews posted a new activity comment https://pulmonaryfibrosisnews.com/forums/activity/p/25715/#acomment-25829 Wed, 03 Mar 2021 13:19:46 -0600 Dear Luke
I think that if might help only if you still have inflammation in the lungs
If you fibrosis it is too late
We are developing the drug and d we I’ll take you into
Consideration in thy e future
Thanks
Nadir

In reply to - Bob posted an update Just read this article from the Tel Aviv Ichilov Hospital researcher Professor Arbor. A new coronavirus treatment being developed at Tel Aviv’s Ichilov Medical Center has successfully […] ]]> 9453d0c6e24e0a1238c4a0972c51838c Luke R Matthews posted a new activity comment https://pulmonaryfibrosisnews.com/forums/activity/p/25715/#acomment-25827 Wed, 03 Mar 2021 13:04:25 -0600 Hello Bob,

I emailed him when I saw an article about which you write. To my surprise he did respond saying he would keep me informed. However I suspect he is covered in Covid research.

In reply to - Bob posted an update Just read this article from the Tel Aviv Ichilov Hospital researcher Professor Arbor. A new coronavirus treatment being developed at Tel Aviv’s Ichilov Medical Center has successfully […] ]]> 6f78930dd4642146b64f44ec6d57095f Luke R Matthews replied to the discussion POSSIBLE MISDIAGNOSIS in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/possible-misdiagnosis/#post-27533 Tue, 02 Mar 2021 09:26:38 -0600 Reply to POSSIBLE MISDIAGNOSIS

Yes Jenny, I could no longer tolerate Ofev and switched to Esbriet. I at least can tolerate this one somewhat better.

To Bill, go and get a second opinion. It is easy to diagnose pulmonary fibrosis but difficult to diagnose IPF. Have you had bloodwork done for autoimmune disease? You need to get involved in your case doing research and study.… Read more

]]> 6f9c7379242ed3fc60f4f06bf5fdc284 Luke R Matthews replied to the discussion Olfactory changes with IPF in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/olfactory-changes-with-ipf/#post-25061 Sat, 25 Jul 2020 17:56:27 -0500 Reply to Olfactory changes with IPF

Hi, I have been wanting to start a topic thread on this but I don’t really know how to do that. I did go to google and asked about this topic and one of the links was this thread. I know it is over two years old but I thought I would try posting.

I have a very similar experience with smells as Lesley. I do sometimes smell smoke, mostly like… Read more

]]> 49a1096fc07890f29f9c271c3d13f285 Luke R Matthews replied to the discussion Trying to Improve Your Memory in the forum PF Life: 50+ https://pulmonaryfibrosisnews.com/forums/forums/topic/trying-to-improve-your-memory/#post-25006 Sun, 19 Jul 2020 15:05:18 -0500 Reply to Trying to Improve Your Memory

Hi Mark,

Thank you for posting the Cleveland Clinic article on memory. It is very informative.

best wishes,

Luke

]]> 3159cf6afc7a3e358f90f2e43e8b7107 Luke R Matthews replied to the discussion EGCG Green Tea Extract in the forum Clinical Trials https://pulmonaryfibrosisnews.com/forums/forums/topic/egcg-green-tea-extract/#post-24959 Tue, 14 Jul 2020 16:16:04 -0500 Reply to EGCG Green Tea Extract

I found your link to the article Dave. Thank you.

Luke

]]> e3551dac31f5b81acaca0398f8461862 Luke R Matthews replied to the discussion EGCG Green Tea Extract in the forum Clinical Trials https://pulmonaryfibrosisnews.com/forums/forums/topic/egcg-green-tea-extract/#post-24958 Tue, 14 Jul 2020 16:14:21 -0500 Reply to EGCG Green Tea Extract

@Dave @Charlene
thank you for your post on bioavailability of EGCG. Could you tell me whether you Talked to Healthy Origins or Teavigo concerning taking EGCG without food? I also take Healthy Origins with 150 mg of Teavigo. The directions state to take with a meal. I have already switched to taking it without meals but would be interested in… Read more

]]> 0e5c6db7c1166967f36c66eb31c5259b Luke R Matthews replied to the discussion Use of medications bought from other countries in the forum Ofev (Nintedanib) https://pulmonaryfibrosisnews.com/forums/forums/topic/use-of-medications-bought-from-other-countries/#post-23962 Tue, 14 Apr 2020 15:37:46 -0500 Reply to Use of medications bought from other countries

Hi Charlene

Both Ofev and Esbriet have programs to help their patients. I believe they will offer financial aid as well. It might be worth it to check with them. Ofev’s program is called Open Doors. The number is 866-673-6366. Esbriet is called Esbriet Inspirstion 844-693-7274

Walgreens Alliance Specialty Drugs has helped me  by providing… Read more

]]> 4290a76fc79d6564315babe2156b0d44 Luke R Matthews replied to the discussion PFTs and a Reduction in DLCO Number. in the forum Upcoming Medical Appointments: Q&As https://pulmonaryfibrosisnews.com/forums/forums/topic/pfts-and-a-reduction-in-dlco-number/#post-23124 Tue, 25 Feb 2020 18:32:12 -0600 Reply to PFTs and a Reduction in DLCO Number.

I had posted earlier about my experience with a reduction in DLCO Numbers that bounced back. Since that post I have experienced a reduction in my DLCO and my FVC Number. Now, Two months since those numbers were recorded they have essentially bounced back to previous levels. In December my DLCO number decreased from 69% to 49%. Last week… Read more

]]> a58bf5e99f9174a9a2410191aaacfdbf Luke R Matthews replied to the discussion Commonly Prescribed Medication For Cholesterol May Benefit IPF Patients in the forum Flash Briefings & Podcasts https://pulmonaryfibrosisnews.com/forums/forums/topic/commonly-prescribed-medication-for-cholesterol-may-benefit-ipf-patients/#post-22816 Mon, 03 Feb 2020 23:51:35 -0600 Reply to Commonly Prescribed Medication For Cholesterol May Benefit IPF Patients

Hi, does anyone know what strength the statins were when given in the study to see a reduction in the fibroblasts.

Luke R Matthews

]]> 50a64dec1a57d580818a063c56e0800e Luke R Matthews replied to the discussion PFTs and a Reduction in DLCO Number. in the forum Upcoming Medical Appointments: Q&As https://pulmonaryfibrosisnews.com/forums/forums/topic/pfts-and-a-reduction-in-dlco-number/#post-21035 Tue, 27 Aug 2019 19:46:31 -0500 Reply to PFTs and a Reduction in DLCO Number.

My DLCO number was 68% on 12/17/18,  58% on 4/16/19, and 69% on 8/16/19. No explanation was given for the changes. As stated above, maybe yours will go back up. My FVC numbers have been stable.

As a side note I started on Ofev and my side effects became worse each month. I talked to my doctor about switching to Esbriet and now have been on… Read more

]]> 7293c8bbf6fed7012b7527d38fc4ce43 Luke R Matthews replied to the discussion Overheating as a Patient with Pulmonary Fibrosis in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/overheating-as-a-patient-with-pulmonary-fibrosis/#post-20933 Tue, 20 Aug 2019 22:21:28 -0500 Reply to Overheating as a Patient with Pulmonary Fibrosis

Hi Charlene,

This is my first post. I have been following the website since very close to my diagnosis of IPF in September 2018. Before my diagnosis I was cold all the time, even in the high humidity of a summer day in south Alabama. It turns out I have an under active thyroid which is  being treated with meds.  I started my IPF treatment on… Read more

]]> 40a540a112ae27b414a30ea05824c314 Luke R Matthews became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/14606/ Tue, 20 Aug 2019 21:58:51 -0500 1