Pulmonary Fibrosis News Forums | Mary Frances | Activity https://pulmonaryfibrosisnews.com/forums/members/maryfrances/activity/ Activity feed for Mary Frances. Wed, 22 Apr 2026 18:29:45 -0500 https://buddypress.org/?v=2.20.0 en-US 30 hourly 2 6d2ba7131657c5da06664d5cf7bd2db5 Mary Frances: @John K. Grubb Are you currently on the powder inhaler Tyveso? https://pulmonaryfibrosisnews.com/forums/activity/p/46038/ Fri, 26 Sep 2025 18:10:30 -0500 @John K. Grubb

Are you currently on the powder inhaler Tyveso?

]]> 0 1423342a1939c0fcd0ca9012c4a8d762 Mary Frances replied to the discussion Some info please on rash in the forum Healthcare Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/some-info-please-on-rash/#post-37679 Fri, 22 Nov 2024 20:55:52 -0600 Reply to Some info please on rash

Hi my mother had a red rash on her back and breast and under her arms. It was itching her. She was covered in red splotches. She was on a low dose of Ofev which she hated and then the Tyveso came out. I believe it was some medication that did that to her. When I took her to the pulmonologist I asked if she could stay on 10 mg of…

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]]> 92e1e87216b151978e0e8ad45626385c Mary Frances posted an update: My mother was diagnosed in 2016. She lived in a 250 year […] https://pulmonaryfibrosisnews.com/forums/activity/p/41276/ Thu, 11 Jan 2024 21:46:58 -0600 My mother was diagnosed in 2016. She lived in a 250 year old historic home. She continued to decline and went from portable oxygen to tanks. Tyvesto was given to her and she was dead 10 days later. Please be careful with the meds they push. Prior to her death we were using low dose prednisone and she said that was the best she felt in years.…

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]]> 0 b601feb522c06f70d3dc34803daed967 Mary Frances started the discussion Tyveso in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/tyveso-2/ Fri, 14 Jul 2023 19:52:09 -0500 Tyveso

Please anyone who has been offered this drug do extensive research. After 10 days of using the powder inhaler my mom became deathly ill. She passed away and continued to tell her doctor how horrible she felt. They never even got her back into the office before she died. Just some information that I want everyone to know! Prayers for all🙏

]]> 211a9d68a087ddb84e0319bb2c8f5311 Mary Frances started the discussion In Loving Memory in the forum In Loving Memory https://pulmonaryfibrosisnews.com/forums/forums/topic/in-loving-memory/ Thu, 27 Apr 2023 16:24:31 -0500 In Loving Memory

♥️Emily West♥️

]]> 091a250bfdd8658a46580eab603aae49 Mary Frances replied to the discussion All IPF Clinical Trials in the forum Clinical Trials https://pulmonaryfibrosisnews.com/forums/forums/topic/all-ipf-clinical-trials/#post-34893 Sun, 16 Apr 2023 18:15:01 -0500 Reply to All IPF Clinical Trials

MAUDE is something you can check in with

]]> 6da646efb577ae414eb7b91bc2d4272a Mary Frances replied to the discussion Shortness of breath and how to catch it in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/shortness-of-breath-and-how-to-catch-it/#post-34862 Mon, 10 Apr 2023 11:37:31 -0500 Reply to Shortness of breath and how to catch it

Have doctor increase your 2 liters of oxygen There are also other cannulas to use for continuous flow. For IPF they also have a full face masks. The doc may do walking and breathing test for you to see if you need your oxygen increased.

]]> 31de454cae1583b542c55d316efe7e00 Mary Frances posted an update: Prayers for my dying mother please🙏🙏🙏 https://pulmonaryfibrosisnews.com/forums/activity/p/38255/ Mon, 10 Apr 2023 00:33:14 -0500 Prayers for my dying mother please🙏🙏🙏

]]> 0 cf14d4d7b2ee984a90b476a78aa1dc7c Mary Frances replied to the discussion The inevitable.... in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/the-inevitable/#post-34860 Mon, 10 Apr 2023 00:29:38 -0500 Reply to The inevitable....

Asking for prayers for my mother Emily. She was diagnosed in 2018. We are not sure when she actually got this disease. We have called in hospice & today being Easter had no care until 5:00. I called at 8 am eastern time. My mother gasped for air since 4 am night before. I’m messaging this to all so hopefully this helps other patients prepare for… Read more

]]> fd790f5124635187e49035d26eb86794 Mary Frances and Mindy are now connected https://pulmonaryfibrosisnews.com/forums/activity/p/38186/ Wed, 05 Apr 2023 01:54:04 -0500 0 411a9d2898590102177a45b639b36239 Mary Frances and Bonnie Welch are now connected https://pulmonaryfibrosisnews.com/forums/activity/p/38184/ Wed, 05 Apr 2023 00:37:33 -0500 0 38c14f39914cdb11afc7b31588b98c64 Mary Frances posted a new activity comment https://pulmonaryfibrosisnews.com/forums/activity/p/38176/#acomment-38183 Wed, 05 Apr 2023 00:23:33 -0500 My mother Emily was diagnosed in 2018 with IPF. We had here on bp meds and started her on 10 mg of prednisone. It worked wonders. Then they wanted her to try Tyveso and Ofev. She cannot tolerate the Ofev and stopped. I read Ofev takes 6- 12 weeks to really get inside of her body. At the 6 week mark they added Tyveso and inhaler 4 times a day.… Read more

In reply to - Mary Frances and Stephen B. Strum, MD are now connected ]]> d6b81b420792f423ec975ab437911253 Mary Frances and Adele Friedman are now connected https://pulmonaryfibrosisnews.com/forums/activity/p/38182/ Tue, 04 Apr 2023 23:28:53 -0500 0 d63286e465eb77c76cb0fb58844b6100 Mary Frances posted an update: @sbstrum If you click on my profile I believe you can […] https://pulmonaryfibrosisnews.com/forums/activity/p/38179/ Tue, 04 Apr 2023 22:55:34 -0500 @sbstrum If you click on my profile I believe you can see everything I posted about her condition. I’d love to hear what anyone has to say

]]> 0 46c85a88b5e047929c57d12da3176d79 Mary Frances and Stephen B. Strum, MD are now connected https://pulmonaryfibrosisnews.com/forums/activity/p/38176/ Tue, 04 Apr 2023 22:04:10 -0500 1 7326373791bbe68b3f1038f2daff44b9 Mary Frances posted an update: @sbstrum WELL SAID!!! https://pulmonaryfibrosisnews.com/forums/activity/p/38175/ Tue, 04 Apr 2023 22:03:38 -0500 @sbstrum WELL SAID!!!

]]> 0 2e1c6900ecd9f6a5ef94c6bab7cc156d Mary Frances posted an update: This is to anyone that can help. Will Dexamethsone […] https://pulmonaryfibrosisnews.com/forums/activity/p/38171/ Tue, 04 Apr 2023 20:44:26 -0500 This is to anyone that can help. Will Dexamethsone be something to replace prednisone?

]]> 1 d5b6ace925fea250b7077c7e9bc2f20c Mary Frances replied to the discussion Tests interval in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/tests-interval/#post-34815 Tue, 04 Apr 2023 20:36:00 -0500 Reply to Tests interval

My mother Emily was diagnosed in 2018 with IPF. We had here on bp meds and started her on 10 mg of prednisone. It worked wonders. Then they wanted her to try Tyveso and Ofev. She cannot tolerate the Ofev and stopped. I read Ofev takes 6- 12 weeks to really get inside of her body. At the 6 week mark they added Tyveso and inhaler 4 times a day.… Read more

]]> 9dbfa146faad23ca6dc18042c834e1ac Mary Frances posted an update: @chris-1964 Did you say you may have gotten IPF from Covid? https://pulmonaryfibrosisnews.com/forums/activity/p/37893/ Fri, 17 Mar 2023 04:42:16 -0500 @chris-1964 Did you say you may have gotten IPF from Covid?

]]> 1 2b07b67561d9f6d63fa8a57d206ed3df Mary Frances replied to the discussion Tyveso in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/tyveso/#post-34660 Fri, 17 Mar 2023 04:07:30 -0500 Reply to Tyveso

Hello my Emily (my brave sweet mother) She has just joined I am praying for all of you. We must share our experiences to help others🙏 You are right Pete everyone is different and needs to be monitored closely We had such a scare

]]> c00301ee4931297685939e49b701fb90 Mary Frances replied to the discussion Tyveso in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/tyveso/#post-34659 Fri, 17 Mar 2023 04:02:09 -0500 Reply to Tyveso

Praying for you My mom has the powder form 4 times a day On day 9 her bp was 200/100 we were calling an ambulance Had to stop the Tyveso & Ofev because she couldn’t stop throwing up the next two days. Made two trips by ambulance over the last 3 days. Her bp is finally coming down and staying at 140/90 What a horrible experience No side effects… Read more

]]> 38decede930c9c63ea57edb3d75f3c30 Mary Frances started the discussion Tyveso in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/tyveso/ Mon, 06 Mar 2023 06:45:24 -0600 Tyveso

Hello All

Is anyone using Tyveso? The powder inhaler that was FDA approved last May 2022 to help pulmonary hypertension in ILD? Any comments are much appreciated

]]> 9506d981485b07c5a34c556306895cf7 Mary Frances posted a new activity comment https://pulmonaryfibrosisnews.com/forums/activity/p/36645/#acomment-36775 Tue, 03 Jan 2023 23:18:02 -0600 Thank you so much!!! Prayers for all of you

In reply to - Mary Frances posted an update @christie-patient Thank you for having me. My mother was diagnosed in 2018 @ 72 years old. She started going downhill last year and was taken off portable and now uses tanks 24/7. […] ]]> 238f88a3d104d56f92f594594003c765 Mary Frances and Christie Patient are now connected https://pulmonaryfibrosisnews.com/forums/activity/p/36751/ Tue, 03 Jan 2023 10:11:56 -0600 0 66feb6cce4d62b0012466253b6c59adb Mary Frances posted an update: @christie-patient Thank you for having me. My mother […] https://pulmonaryfibrosisnews.com/forums/activity/p/36645/ Wed, 28 Dec 2022 16:52:38 -0600 @christie-patient Thank you for having me. My mother was diagnosed in 2018 @ 72 years old. She started going downhill last year and was taken off portable and now uses tanks 24/7. She was so congested they moved her to 8 liters. She cannot tolerate the other medication. It made her sick. We tried a low dose prednisone everyday and now she is… Read more

]]> 2 f603053cc8812e240a457a8cf999bbbe Mary Frances posted an update: @pegs I read that you said they put you on the prednisone […] https://pulmonaryfibrosisnews.com/forums/activity/p/36644/ Wed, 28 Dec 2022 16:37:43 -0600 @pegs I read that you said they put you on the prednisone & then take you off. I have found that a low dose every day has helped my mother tremendously. They would only give it to her during exacerbation. She would get better then when she was off it she would get contested again. I asked the doctor to please let’s try 5 mg every day. Her… Read more

]]> 0 e523b79f75325933c9d5a4dabbf217b6 Mary Frances started the discussion Prednisone in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/prednisone/ Wed, 21 Dec 2022 15:22:06 -0600 Prednisone

Try a low dose of prednisone everyday We have gotten wonderful results!!!

]]> 9740fb087d7ec4908800f09a3c8f6d8d Mary Frances became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/34720/ Mon, 08 Aug 2022 13:44:35 -0500 1