Good news for URSO: cam.ac.uk/stories/UDCA... - PBC Foundation

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Good news for URSO

zinchunter profile image
15 Replies

cam.ac.uk/stories/UDCA-COVID19

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zinchunter profile image
zinchunter
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15 Replies
Candy12 profile image
Candy12

Thank you you for posting I will read it later, there was a short discussion on the subject of URSO and covid on the PBC Foundation Q&A session on their Facebook page, if you’ve not watched it it’s worth a listen. It was couple weeks ago Prof David Jones was the guest speaker.

berg944 profile image
berg944

Was anybody on this group hospitalised with covid? Assuming you take Urso.

Stub007 profile image
Stub007 in reply toberg944

I have been taking Urso for four years and have stayed reasonably active; I have never had Covid symptoms, for what it’s worth.

Don

Larrysgirl profile image
Larrysgirl

I tested positive last year for covid and only had what felt like the mild flu. I also recovered quickly.

Blessings , Anni

CBCB profile image
CBCB

I have been taking Ursodiol for over ten years. After getting the Moderna vaccine and one booster I contracted Covid. It was terrible, total fatigue, major aches and pains, could hardly get out of bed for 3 days. Took a course of Plaxovid and felt better for a few days. Symptoms retuned even worse than before. Certainly the Ursodiol did not protect me at all. My Docs felt the outcome may have been much worse if I had not been vaccinated and boosted. I may be an anomaly but much more study must be done.

Danteskid profile image
Danteskid in reply toCBCB

I also had Covid with severe symptoms, high fever, lung congestion, aches, headache, etc. I am vaccinated, boosted. I don’t think that being on Urso protected me at all. So I would be suspect of this study.

Michi1 profile image
Michi1

I've been on Urso since mid-2016. I had Covid twice. The first time was in December 2019 before we knew what it was. I get coffee every morning in the tourist mall in Miami where the disembarked cruise ship passengers often go and probably caught it there. I was VERY sick with 102 degree fever that lasted four or five days and the coughing lasted about a month, but it never turned into pneumonia or got in my lungs as far as I know. The second time was after 3 vaccinations in the Omicron wave last summer. That time I was in bed for two days and felt crappy for a few more but the cough didn't last like the first time and the fever was lower.

I can't say I like the idea of Urso being seen as the magic pill for Covid. During the original surge in 2020 I saw an article implying Urso may help with Covid and I prayed it wouldn't catch on. Although it may cause more production in the long term, the shorter and mid-term result would be a likely shortage and significantly rising prices that would probably never return to normal (Just as the increase around 2014 or 2015 NEVER returned to normal). It's my understanding before 2014 in the US Urso cost about $20 a month. Then one of the five manufacturers egregiously increased the price and the others followed, proving the fallacy of supply and demand controlling costs in an inflexible demand market. Those of you in the UK may not be affected by this but in the U.S. the pharmacy price for Urso is about $260 a month now. There are cheaper sources, but the best I've found is about $160 a month. For those of us with high deductibles on many plans it's not covered by insurance.

Gmama2 profile image
Gmama2 in reply toMichi1

Try googling GoodRx, they offer discounts on prescriptions. I pay about $55/mo. now. You might need to switch pharmacies to get the cheapest prices, Just show the code to the pharmacy.

Michi1 profile image
Michi1 in reply toGmama2

I use GoodRX, too and I was mistaken . That's the 3 month price. Still, it's not cheap and I find it ironic that my insurer's "negotiated" price is over $100 more. I have new insurance this year so it's a whole new game.

Gmama2 profile image
Gmama2 in reply toMichi1

My insurance just approved mine. I am curious to see how much it is or if good RX is still cheaper.

nan1012 profile image
nan1012

I’ve been on Urso for over 10 years- had Covid in Jan 2021- had monoclonal antibody infusion, was sick for 3 weeks, cough, fever, headache, diarrhea and worse fatigue than normal. Got vaccinated July 2021- had mild reaction. Had booster in Jan 2022 for overseas travel- felt sick for 2 days from booster. Had 2nd round of Covid in early May 2022- almost same symptoms as first time, except worse headache and no diarrhea. Just stayed home and treated symptoms. I did not lose my taste and smell, but my husband lost his after booster and still has not regained it. We are in our late 60’s.

Gmama2 profile image
Gmama2

I had the original COVID in late 2020 and just had it again in late 2022. I was not on Urso in 2020, and it lasted about a week, nothing too terrible, mostly headache and fever. This time it was milder, one day fever, headache, nasal congestion for a few days. I was able to take 45 minute walks all but one day, and was able to work from home. I don’t think urso did anything for me, mine was milder than my husbands case. Never vaxxed. I figured the first round was fine so I am waiting for long- term safety/efficacy data, which is looking dodgy.

Eppy profile image
Eppy in reply toGmama2

Hi ive had Covid 3times one in Dec 2019 before it came out as Covid

March 2020 April 2022

Vaccine 2 pfizer

Then had booster pfizer in August 2023 problems started from then with tummy etc

blood test and diagnosed PCB January 2023

islandanonymous profile image
islandanonymous

I've been taking Urso for 10 years. I probably had Covid in Feb. 2020 (before anybody in Canada was able to diagnose it). I was very sick for a couple of weeks. Then I definitely had it over during Christmas last year and got hit pretty hard with it. Felt horrible for three days, didn't eat, slept almost right through. Was pretty sick for two weeks. Having them claim that Urso might help prevent Covid is a big surprise. It just wasn't the case for me.

Urso in Canada is expensive. A three month supply costs me just under $170.

zinchunter profile image
zinchunter in reply toislandanonymous

From all the comments here it does seem ghat the research claims are not reflected in pbc-ers. On the other hand our "research" is ad hoc and not very scientific. We don't know those who would have got it but didn't because of URSO! I feel that this was me as my wife caught it when we were on holiday but not me. I think that the cost of making URSO is not particularly high but the price is high. Best wishes, William

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