Urso: Has anyone not had symptoms of PCB... - PBC Foundation

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Urso

1155Cat profile image
13 Replies

Has anyone not had symptoms of PCB, then 3 weeks after starting medicine started with the itching ??

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1155Cat
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13 Replies
P13jne profile image
P13jne

Hi 1155, yes I had no itching untilI started Urso. Jane xx

Spanishnan profile image
Spanishnan

Yes I had terrible itching for the first 3 weeks but then it settled down.

1155Cat profile image
1155Cat in reply toSpanishnan

I have been on URSO for 3 weeks and the itching just started ... not all the time but a day here and there !! After the 1 day of itching I thought I had been reading about it to much ... but the last 24 hours ... ugh !!

gwillistexas profile image
gwillistexas in reply to1155Cat

I have never itched (so far), but when I was first started on URSO, I had sporadic itching which eventually stopped. Then I broke out in welts. Dr stopped it immediately and said I was allergic. I’ve been on ocaliva ever since and no itch. Hope yours gets better.

1155Cat profile image
1155Cat in reply togwillistexas

Thanks ... hopefully this is a temporary itch !!

gwillistexas profile image
gwillistexas in reply to1155Cat

Hope so. You’re welcome 😊

Gillian61 profile image
Gillian61

Hi. I had no symptoms until taking Urso and then had painful joints, palpitations and feelings of dread but no itch. I stopped taking Urso and back to no symptoms.I have an appointment with the consultant next week.

tinypixie profile image
tinypixie

I had itching for the first 2-3 days and then it stopped. I’ve been taking URSO ever since (3 years or so) and never had any more problems.

littysgirl profile image
littysgirl

I've been on it for several years now, so i'ts hard to remember, but I do remember initially feeling just awful on Urso and thinking that this was no quality of life and I wasn't going to take this medicine for the rest of my life to feel like this - and then it eased off and I feel like I have no symptoms from the medicine at all. I remember having a bad headache for almost a week and I am not prone to headaches and I believe I also had significant itching. I still get it periodically, usually at night before I go to bed. I probably shouldn't but I scratch myself with an old hairbrush that doesn't have the plastic tips any more and then immediately apply lotion to the area I scratched. That seems to solve the itch and then calm it down. I use a lotion that has menthol in it so it has a little kick to it.

1155Cat profile image
1155Cat

Now that you mention headache ... I have had a mild headache for about a week ... 🤔

Karaxxx profile image
Karaxxx

Yes I started itching a few weeks after I was put on the Urso. It was unbearable. It seems to have settled down now after a few tweaks & with taking another drug to counteract it. My Urso dose has now been lowered & I’m having bloods re checked in a month to see if it’s still working on the lower dose. If not I’ll have to up the dose again & hope the itching doesn’t come back or I’ll be back on the 2nd drug along side it again 🤷‍♀️

1155Cat profile image
1155Cat

Hopefully the meds continue working at the lower dose ... I finally ended up taking Benadryl and it did relieve the itch for the most part ... the itch was making me crazy 😜

Karaxxx profile image
Karaxxx in reply to1155Cat

Yes I hope so, I feel your pain. It drove me mad! Always worse at night & interrupted my sleep. Terrible in the heat too. I was on Rifampicin & got headaches from that for the first week or so but it really helped with the itching. I’m off that now, on a lower Urso dose & no itching 😊

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