# Life with Primary Sclerosing Cholangitis **URL:** https://forum.livingwithpsc.org/c/general/10.md?page=2 [Latest](https://forum.livingwithpsc.org/latest.md) · [Categories](https://forum.livingwithpsc.org/categories.md) **Page:** 3 --- ## [Results from biopsy in](https://forum.livingwithpsc.org/t/results-from-biopsy-in/5164)
**Author:** [@Skamm](https://forum.livingwithpsc.org/u/Skamm)\ **Replies:** 6\ **Last updated:** [February 7, 2023, 9:59am UTC](https://forum.livingwithpsc.org/t/results-from-biopsy-in/5164 "2023-02-07T09:59:37Z")
Ended up in the hospital with fever,chills,and night sweats, they removed the stent and were then able to get a biopsy of the bile duct. The results were negative. Since then I have gotten my appetite back but the fatigu… --- ## [Ben’s Friends Lead Interns](https://forum.livingwithpsc.org/t/ben-s-friends-lead-interns/5163)
**Author:** [@BF\_Writer](https://forum.livingwithpsc.org/u/BF_Writer)\ **Replies:** 0\ **Last updated:** [January 30, 2023, 5:13am UTC](https://forum.livingwithpsc.org/t/ben-s-friends-lead-interns/5163 "2023-01-30T05:13:36Z")
Sascha Gallardo – February 1, 2021 Keeping Ben’s Friends communities safe and supportive would not be possible without the help of wonderful people who devote their time and skills to meet this objective. We have mode… --- ## [Pilots?](https://forum.livingwithpsc.org/t/pilots/465)
**Author:** [@CJ1](https://forum.livingwithpsc.org/u/CJ1)\ **Replies:** 10\ **Last updated:** [January 27, 2023, 9:10pm UTC](https://forum.livingwithpsc.org/t/pilots/465 "2023-01-27T21:10:52Z")
I'm curious if there are any pilots on this board who have to maintain a first class medical. I fly professionally and it would be helpful to know if there's anyone else who's dealing with PSC as I am. Thanks. --- ## [Nonprofit SnapCast features Ben Munoz](https://forum.livingwithpsc.org/t/nonprofit-snapcast-features-ben-munoz/5158)
**Author:** [@BF\_Writer](https://forum.livingwithpsc.org/u/BF_Writer)\ **Replies:** 0\ **Last updated:** [January 26, 2023, 8:49am UTC](https://forum.livingwithpsc.org/t/nonprofit-snapcast-features-ben-munoz/5158 "2023-01-26T08:49:41Z")
Sascha Gallardo – February 24, 2021 Nonprofit Snapcast, a podcast that tackles nonprofit management issues, recently featured Ben’s Friends president and co-founder, Ben Munoz. The interview focused specifically on how… --- ## [FISH Test](https://forum.livingwithpsc.org/t/fish-test/5143)
**Author:** [@Ett513](https://forum.livingwithpsc.org/u/Ett513)\ **Replies:** 8\ **Last updated:** [January 21, 2023, 9:25pm UTC](https://forum.livingwithpsc.org/t/fish-test/5143 "2023-01-21T21:25:25Z")
Hey all, Curious as to your thoughts here: I had an ERCP with stent placement on 12/5 and the cytology/biopsies on my strictures came back negative. My semi annual MRCP was performed on 12/29 and my herpetologist said… --- ## [Congratulations Eugene\_Jr on Transplant!](https://forum.livingwithpsc.org/t/congratulations-eugene-jr-on-transplant/5142)
**Author:** [@fcmmark](https://forum.livingwithpsc.org/u/fcmmark)\ **Replies:** 8\ **Last updated:** [January 21, 2023, 5:34pm UTC](https://forum.livingwithpsc.org/t/congratulations-eugene-jr-on-transplant/5142 "2023-01-21T17:34:52Z")
We want to send congratulations to @Eugene\_JR on his successful liver transplant Thursday. We are glad that things went well and wish you a speedy recovery. Very thankful for this gift of LIFE that you have received my… --- ## [Two Disabled Dudes Podcast features Ben Munoz](https://forum.livingwithpsc.org/t/two-disabled-dudes-podcast-features-ben-munoz/5146)
**Author:** [@BF\_Writer](https://forum.livingwithpsc.org/u/BF_Writer)\ **Replies:** 0\ **Last updated:** [January 18, 2023, 3:19am UTC](https://forum.livingwithpsc.org/t/two-disabled-dudes-podcast-features-ben-munoz/5146 "2023-01-18T03:19:15Z")
Sascha Gallardo – March 30, 2021 In Two Disabled Dudes podcast episode number 138, Ben shared inspiring lessons he learned from having an AVM stroke, coping with the loneliness and fear during recovery, and making the … --- ## [Doctors prescribing Vancomycin for PSC in Europe](https://forum.livingwithpsc.org/t/doctors-prescribing-vancomycin-for-psc-in-europe/4215)
**Author:** [@arb90](https://forum.livingwithpsc.org/u/arb90)\ **Replies:** 8\ **Last updated:** [January 7, 2023, 9:26pm UTC](https://forum.livingwithpsc.org/t/doctors-prescribing-vancomycin-for-psc-in-europe/4215 "2023-01-07T21:26:45Z")
Hi All, I’ve been a long time lurker as my girlfriend (27) was diagnosed with PSC in early 2020. She has had UC for the past 6-7 years and when her liver numbers started to go up last fall, her doctors in Norway diagnos… --- ## [Rib pain (not under rib cage)](https://forum.livingwithpsc.org/t/rib-pain-not-under-rib-cage/1806)
**Author:** [@Jkozwmu](https://forum.livingwithpsc.org/u/Jkozwmu)\ **Replies:** 13\ **Last updated:** [December 23, 2022, 10:47pm UTC](https://forum.livingwithpsc.org/t/rib-pain-not-under-rib-cage/1806 "2022-12-23T22:47:18Z")
Not sure if this is something that is associated with doing a sit up slightly to aggressively, or related to a recent cholgitis attack, but my rib, not under, actual rib, about four ribs from the top hurts…almost like a … --- ## [Those with multiple ercps](https://forum.livingwithpsc.org/t/those-with-multiple-ercps/1329)
**Author:** [@JeffDC1](https://forum.livingwithpsc.org/u/JeffDC1)\ **Replies:** 10\ **Last updated:** [December 17, 2022, 11:42pm UTC](https://forum.livingwithpsc.org/t/those-with-multiple-ercps/1329 "2022-12-17T23:42:07Z")
I have had multiple ercps after varying amounts of time from the first sympton that led up to each ercp. One took two months, one took two weeks, and my most recent on, was one day, although I think I was fighting off … --- ## [Ursodiol](https://forum.livingwithpsc.org/t/ursodiol/112)
**Author:** [@EAD3](https://forum.livingwithpsc.org/u/EAD3)\ **Replies:** 36\ **Last updated:** [December 8, 2022, 4:35pm UTC](https://forum.livingwithpsc.org/t/ursodiol/112 "2022-12-08T16:35:26Z")
I have small duct PSC and have been statrted on Urso. Has anyone had a good or bad experience with Urso? EAD3 --- ## [How Ben’s Friends moderators work as a team](https://forum.livingwithpsc.org/t/how-ben-s-friends-moderators-work-as-a-team/5117)
**Author:** [@BF\_Writer](https://forum.livingwithpsc.org/u/BF_Writer)\ **Replies:** 0\ **Last updated:** [December 8, 2022, 5:10am UTC](https://forum.livingwithpsc.org/t/how-ben-s-friends-moderators-work-as-a-team/5117 "2022-12-08T05:10:06Z")
Sascha Gallardo – September 29, 2021 Around 45,000 individuals make use of Ben’s Friends communities every month. People suffering from a rare disease are looking for information about how others like them cope. Man… --- ## [4 tips on how to get the most out of your Ben’s Friends patient community](https://forum.livingwithpsc.org/t/4-tips-on-how-to-get-the-most-out-of-your-ben-s-friends-patient-community/5116)
**Author:** [@BF\_Writer](https://forum.livingwithpsc.org/u/BF_Writer)\ **Replies:** 0\ **Last updated:** [December 7, 2022, 4:27am UTC](https://forum.livingwithpsc.org/t/4-tips-on-how-to-get-the-most-out-of-your-ben-s-friends-patient-community/5116 "2022-12-07T04:27:14Z")
Sascha Gallardo – September 30, 2021 You probably have been checking a Ben’s Friends community site for a while. Maybe you have been feeling some symptoms and our site came out on your online search. Or maybe you ha… --- ## [Ursodiol thinning bile acid](https://forum.livingwithpsc.org/t/ursodiol-thinning-bile-acid/4793)
**Author:** [@beckym](https://forum.livingwithpsc.org/u/beckym)\ **Replies:** 21\ **Last updated:** [November 25, 2022, 4:14pm UTC](https://forum.livingwithpsc.org/t/ursodiol-thinning-bile-acid/4793 "2022-11-25T16:14:07Z")
Last week I was started on Ursodiol after a severe cholangitis attack. I presented to the ER with a 102.5 fever, severe right upper quadrant (RUQ) abdominal pain, and nausea. We’d treated previous attacks of pain and nau… --- ## [At what point have people gone off work with PSC?](https://forum.livingwithpsc.org/t/at-what-point-have-people-gone-off-work-with-psc/5096)
**Author:** [@Buco](https://forum.livingwithpsc.org/u/Buco)\ **Replies:** 17\ **Last updated:** [November 12, 2022, 10:39pm UTC](https://forum.livingwithpsc.org/t/at-what-point-have-people-gone-off-work-with-psc/5096 "2022-11-12T22:39:53Z")
Hi all. A little about myself. I am a construction welder for work. I have colitis since age 8, and psc for a few years now. I had bile obstructions in January and in June. I had a apt today with a liver surgeon and im … --- ## [Down syndrome with transplant…](https://forum.livingwithpsc.org/t/down-syndrome-with-transplant/5079)
**Author:** [@Mollie](https://forum.livingwithpsc.org/u/Mollie)\ **Replies:** 5\ **Last updated:** [November 1, 2022, 11:29pm UTC](https://forum.livingwithpsc.org/t/down-syndrome-with-transplant/5079 "2022-11-01T23:29:52Z")
Continuing the discussion from PSC & Down Syndrome: Hello everyone, Wanted to let you all know Alana had her transplant from a live donor on August first of this year. She is home doing pretty well though she had a few… --- ## [Eating liver](https://forum.livingwithpsc.org/t/eating-liver/5085)
**Author:** [@kng](https://forum.livingwithpsc.org/u/kng)\ **Replies:** 4\ **Last updated:** [November 1, 2022, 9:32pm UTC](https://forum.livingwithpsc.org/t/eating-liver/5085 "2022-11-01T21:32:00Z")
Hi All, Has anyone tried eating liver (chicken, meat livers, etc), or know of a study doing this? Was wondering if it would help slow down or reverse the disease. Thanks --- ## [Another cholangitis attack](https://forum.livingwithpsc.org/t/another-cholangitis-attack/5076)
**Author:** [@GlasshalfFULL](https://forum.livingwithpsc.org/u/GlasshalfFULL)\ **Replies:** 5\ **Last updated:** [October 24, 2022, 11:06pm UTC](https://forum.livingwithpsc.org/t/another-cholangitis-attack/5076 "2022-10-24T23:06:06Z")
Hey All, I’m currently having an attack with fevers pushing 103 when not taking tylenol (as sparingly as possible) I started a round of Cipro thos afternoon as I have them on hand to do a lot of travel in the past. My q… --- ## [First post transplant issue](https://forum.livingwithpsc.org/t/first-post-transplant-issue/5075)
**Author:** [@JeffDC1](https://forum.livingwithpsc.org/u/JeffDC1)\ **Replies:** 8\ **Last updated:** [October 20, 2022, 3:41pm UTC](https://forum.livingwithpsc.org/t/first-post-transplant-issue/5075 "2022-10-20T15:41:14Z")
On Thursday, Oct. 6, I had my first post transplant problem (tx on June 2017). I felt weak and dizzy, so I went home to sleep it off. I ended up with chills and a fever of 101.7. I went to an Urgent Care and they said … --- ## [GS-9674 Phase 3 Study (YOU WANT TO READ THIS)](https://forum.livingwithpsc.org/t/gs-9674-phase-3-study-you-want-to-read-this/4789)
**Author:** [@StevefromMichigan](https://forum.livingwithpsc.org/u/StevefromMichigan)\ **Replies:** 24\ **Last updated:** [September 29, 2022, 10:47am UTC](https://forum.livingwithpsc.org/t/gs-9674-phase-3-study-you-want-to-read-this/4789 "2022-09-29T10:47:12Z")
Over the past two years, I have been participating in Gilead’s GS-9674 PSC study, which involves taking an experimental drug now labeled as Cilofexor. Cilofexor is a “nonsteroidal FXR agonist”, and its function is suppos… --- ## [Yet another vancomycin success story](https://forum.livingwithpsc.org/t/yet-another-vancomycin-success-story/2599)
**Author:** [@Andreas](https://forum.livingwithpsc.org/u/Andreas)\ **Replies:** 87\ **Last updated:** [September 29, 2022, 4:52am UTC](https://forum.livingwithpsc.org/t/yet-another-vancomycin-success-story/2599 "2022-09-29T04:52:29Z")
Hello everyone, By now you’ve probably heard of vancomycin success stories umpteen times. Here’s another one. If you haven’t read the topic I posted in March of this year, here’s a recap. I live in Sweden and have (asy… --- ## [Pliant Therapeutics Receives FDA Fast Track Designation for PLN-74809 for the Treatment of Primary Sclerosing Cholangitis](https://forum.livingwithpsc.org/t/pliant-therapeutics-receives-fda-fast-track-designation-for-pln-74809-for-the-treatment-of-primary-sclerosing-cholangitis/5055)
**Author:** [@GlasshalfFULL](https://forum.livingwithpsc.org/u/GlasshalfFULL)\ **Replies:** 3\ **Last updated:** [September 22, 2022, 12:28am UTC](https://forum.livingwithpsc.org/t/pliant-therapeutics-receives-fda-fast-track-designation-for-pln-74809-for-the-treatment-of-primary-sclerosing-cholangitis/5055 "2022-09-22T00:28:24Z")
Pliant Therapeutics Receives FDA Fast Track Designation for PLN-74809 for the Treatment of Primary Sclerosing Cholangitis Havent seen anyone post about this yet so figured i would send the link out. --- ## [Preparing for Your Doctor’s Appointment](https://forum.livingwithpsc.org/t/preparing-for-your-doctor-s-appointment/5041)
**Author:** [@BF\_Writer](https://forum.livingwithpsc.org/u/BF_Writer)\ **Replies:** 1\ **Last updated:** [August 14, 2022, 2:09am UTC](https://forum.livingwithpsc.org/t/preparing-for-your-doctor-s-appointment/5041 "2022-08-14T02:09:33Z")
Sascha Gallardo – October 13, 2020 Getting the most out of your consultation with a doctor for a rare disease is already challenging. Now that we are also dealing with the Covid-19 pandemic, the challenge has been do… --- ## [Ben’s Friends to launch Ben’s Connections soon](https://forum.livingwithpsc.org/t/ben-s-friends-to-launch-ben-s-connections-soon/5037)
**Author:** [@BF\_Writer](https://forum.livingwithpsc.org/u/BF_Writer)\ **Replies:** 0\ **Last updated:** [July 28, 2022, 3:53am UTC](https://forum.livingwithpsc.org/t/ben-s-friends-to-launch-ben-s-connections-soon/5037 "2022-07-28T03:53:20Z")
Sascha Gallardo – January 31, 2022 Ben’s Friends communities were created so that people affected by a rare or chronic illness can have a place to connect with others like them. Through the years, we have witnessed co… --- ## [Connect with Ben’s Friends!](https://forum.livingwithpsc.org/t/connect-with-ben-s-friends/5029)
**Author:** [@BF\_Writer](https://forum.livingwithpsc.org/u/BF_Writer)\ **Replies:** 0\ **Last updated:** [July 19, 2022, 12:24am UTC](https://forum.livingwithpsc.org/t/connect-with-ben-s-friends/5029 "2022-07-19T00:24:46Z")
Sascha Gallardo – July 1, 2022 Good news! You can now receive a copy of Ben’s Friends’ quarterly e-newsletter. By subscribing to our newsletter, you will: Get updates about our new and existing projects. Aside fr… --- ## [My Daughter - Upcoming Live Donor Transplant?](https://forum.livingwithpsc.org/t/my-daughter-upcoming-live-donor-transplant/5024)
**Author:** [@fcmmark](https://forum.livingwithpsc.org/u/fcmmark)\ **Replies:** 6\ **Last updated:** [July 15, 2022, 12:30am UTC](https://forum.livingwithpsc.org/t/my-daughter-upcoming-live-donor-transplant/5024 "2022-07-15T00:30:44Z")
The following post is from our member Mollie. She asked me to post this for her as she was having difficulty. Please give her some good feedback in support of her care for her dear daughter. Mark Hello friends, It’s… --- ## [Some of the Autoimmune Rare Diseases in Ben’s Friends List of Communities](https://forum.livingwithpsc.org/t/some-of-the-autoimmune-rare-diseases-in-ben-s-friends-list-of-communities/5026)
**Author:** [@BF\_Writer](https://forum.livingwithpsc.org/u/BF_Writer)\ **Replies:** 0\ **Last updated:** [July 11, 2022, 9:00am UTC](https://forum.livingwithpsc.org/t/some-of-the-autoimmune-rare-diseases-in-ben-s-friends-list-of-communities/5026 "2022-07-11T09:00:05Z")
Sascha Gallardo – July 1, 2022 The immune system is supposed to protect us by attacking bacteria and viruses. For people who have autoimmune diseases, however, their immune system attacks their own cells. This can ca… --- ## [Ben’s Friends Self-Advocacy Project for Members](https://forum.livingwithpsc.org/t/ben-s-friends-self-advocacy-project-for-members/5025)
**Author:** [@BF\_Writer](https://forum.livingwithpsc.org/u/BF_Writer)\ **Replies:** 0\ **Last updated:** [July 11, 2022, 6:40am UTC](https://forum.livingwithpsc.org/t/ben-s-friends-self-advocacy-project-for-members/5025 "2022-07-11T06:40:12Z")
Sascha Gallardo – January 31, 2022 Ben’s Friends to launch Self-Advocacy Project for members Having a rare and chronic illness is definitely not easy. From searching for an accurate diagnosis to finding the doctor you… --- ## [Vancomycin - Petition to AASLD to Continue Insurance Coverage for PSC Patients](https://forum.livingwithpsc.org/t/vancomycin-petition-to-aasld-to-continue-insurance-coverage-for-psc-patients/5017)
**Author:** [@fcmmark](https://forum.livingwithpsc.org/u/fcmmark)\ **Replies:** 2\ **Last updated:** [July 7, 2022, 10:36pm UTC](https://forum.livingwithpsc.org/t/vancomycin-petition-to-aasld-to-continue-insurance-coverage-for-psc-patients/5017 "2022-07-07T22:36:42Z")
We were made aware by one of our patient members that the American Association for the Study of Liver Diseases (AASLD) is preparing to publish Guidance that would make it significantly harder for PSC patients to get oral… --- ## [Fatigue after transplant](https://forum.livingwithpsc.org/t/fatigue-after-transplant/4991)
**Author:** [@khogie3](https://forum.livingwithpsc.org/u/khogie3)\ **Replies:** 6\ **Last updated:** [June 7, 2022, 11:54am UTC](https://forum.livingwithpsc.org/t/fatigue-after-transplant/4991 "2022-06-07T11:54:25Z")
Hi. I am just looking for input on how post-transplant recipients feel regarding their fatigue, pre vs post. Do you find a noticeable improvement? I don’t know if tiredness is liver disease or just life lol. I have late … [Previous page](https://forum.livingwithpsc.org/c/general/10.md?page=1) [Next page](https://forum.livingwithpsc.org/c/general/10.md?page=3)