Pbc

[janine541]

Well started a trial drug that I'm unsure what it was but had to stop all my medication as the itch was un bearable

Having to see my consultant every 2 weeks now to check

Any body else had this

[Buddy2017]

Haven't done a trial but my consultant started me on fibrates , I lasted 2 weeks on them , I felt as if I had a thousand head lice crawling on my head and then down my legs and arms. I've never suffered with the itch before and I feel sorry for people who suffer all the time. It took 3 days off the fibrates for it to stop. I haven't seen my Consultant yet and she doesn't know I've stopped them

[Biddyb]

Hi stranger sorry to hear that the trial was not good for you. What is the next step for you. I managed somehow to get my LFTs to normal and my latest Fibroscan showed no fibrosis or cirrhosis

We really must try and meet up for that coffee sometime. Are you still working?

[janine541 in reply to Biddyb]

Hi we really should I am working and off on holiday this next week but when I get back that would be good

[Biddyb in reply to janine541]

Let me know when you’re back and we’ll see if we can make a plan and hopefully stick to it 🤔

[janine541 in reply to Biddyb]

Sounds good x

[Tigger858]

Hi, I wasn’t involved in a trial but there is a brand of Urso that has the same affect on me. I itched constantly, couldn’t sleep for it😢 almost felt suicidal and the only thing that was different was this brand of Urso. Stopped taking them, spoke to the pharmacist and although the main ingredients were the same, there was something in the shell that didn’t agree with me. Back to my normal brand and no problem. It just proves that it only needs a small change to cause a problem.

[Biddyb in reply to Tigger858]

I posted a while ago about generics my bloods raised every time I took them. My bloods dropped when I took Ursofalk the medical profession argued the point but seems that the proof is in the results my bloods are all in range after refusing the generic brands for several months. Luckily Boots supply Ursofalk even when the script is for generic. Keep fighting when you know what’s good for you

[pdhoover in reply to Tigger858]

Would you be willing to share which generic brand of Urso you took that created the problem. I am having HORRIBLE problems with itch. Two skin biopsies have resulted in a diagnosis of drug allergy. I am curious to see if we were taking the same drug. I never really thought about the fact my generic supplier might have changed without my knowledge.

[gwillistexas in reply to pdhoover]

If I may comment on your post, I had a problem with the ursodiol capsule. My GI wouldn’t even try the tablet. I’ve always wondered if I might could have tolerated the tablet form. I have heard from very few who took the capsules and they seemed to have had problems possibly because of fillers. So this is why I’m on OCA only.

[pdhoover in reply to gwillistexas]

what is oca ? I am not familiar with that term

[gwillistexas in reply to pdhoover]

G’morning. I apologize. That is Ocaliva.

[pdhoover in reply to gwillistexas]

Thanks for the quick reply!! Know that you are not alone with an itch as intense as you described. Hope things go better for you with Ocaliva

[gwillistexas in reply to pdhoover]

I have no itch. Never have. Maybe you have me confused with someone else? I’ve had no side effects with ocaliva

[pdhoover in reply to gwillistexas]

Gosh, I responded to the wrong post by mistake!!

[gwillistexas in reply to pdhoover]

Lol! It’s ok. It happens 😀

[pdhoover in reply to Tigger858]

oh my gosh! I have the same itching to the degree you describe. May I ask that you share the brand of Urso that gave you such a fit so I can compare and also request the brand that works for you. Two different skin biopsies were done on me and they both came back as drug allergy. I have been of this medicine for 7 years without much problem so I am going to investigate if they switched the manufacturer. Any input from you would be so appreciated

[janine541]

Oh right well I've come off all mine for four weeks and the itch has gone

[Candy12 in reply to janine541]

So sorry the trial didn’t help you. Tiger858 & BiddyB were saying about the branded vs generic urso. Not sure this will be of any help, but I read a letter in the recent Bearfacts magazine, from a lady who takes the liquid form of urso. Apparently when she began taking it in Liquid form her itch stopped. If you can’t tolerate the tablet forms of urso could it be those pesky fillers which of course you wouldn’t get in with the liquid form. Might be worth a try.