Many medical conditions : I wonder if my body... - PBC Foundation

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Many medical conditions

Evaibrahim60 profile image
19 Replies

I wonder if my body is rejecting most of my medications. I have on and off skin rashes for more than two years now. Ursofalk is my main suspension that is responsible for it. I had to stop Ursofalk without my doctor advice! Anyone else has this problem?

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Evaibrahim60 profile image
Evaibrahim60
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19 Replies
Angel_b profile image
Angel_b

Were you having other side effects as well as the rashes? I would double check with your doctor first as it may not be related.

I’ve been having trouble with a rash across my cheeks. It’s started to look like I’ve got blusher on even though I’m normally very pale so it’s a first for me to have any colour on my face (other than makeup). I’ve no idea what it is but urso appears to be working so sticking with it.

gwillistexas profile image
gwillistexas in reply to Angel_b

Rosacea can make your cheeks red. I have it but have had for many years. Nothing to do with PBC or meds.

gwillistexas profile image
gwillistexas in reply to Angel_b

Research Roseaca & read the Mayo Clinic link.

Angel_b profile image
Angel_b in reply to gwillistexas

Thanks gwillstexas. I’ll have a look. I didn’t think it was to do with pbc. Do you use any particular foundation to cover it up? My usual one doesn’t always do the trick.

gwillistexas profile image
gwillistexas in reply to Angel_b

No, I just have to easy with my blush. I think I read years ago that fair skin people are more likely to have it. Don’t know if that’s so. I didn’t read the full article on Mayosl link but I think it will explain very well.

gwillistexas profile image
gwillistexas in reply to Angel_b

I don’t have bumps, just red. One of my uncles on mom’s side has it & I think my mom had a little. Some people’s nose gets red😟

Evaibrahim60 profile image
Evaibrahim60 in reply to gwillistexas

Thanks but it’s not my cheeks and my rashes go alovcover my whole body.tries all cortisone creams but didn’t work

gwillistexas profile image
gwillistexas in reply to Evaibrahim60

Sorry, your post said it is across your cheeks.

Evaibrahim60 profile image
Evaibrahim60 in reply to gwillistexas

Thanks but I believe you have read someone else advice to me in which she mentioned her own experience but not mine.

gwillistexas profile image
gwillistexas in reply to Evaibrahim60

Yes, sorry I replied to wrong person. Should have been to Angel_b

donna01 profile image
donna01

Do not take any other meds with Urso. I believe you're supposed to take them 2 to 3 hours apart.

Evaibrahim60 profile image
Evaibrahim60 in reply to donna01

Thanks Donna I believe that is true because I used to rake two 250 capsules in the morning and two at night. I managed to stay two hours between them and my other medications and was good for a while. After that it was changed to two 500 tablets, then rashes was unbearable so I stoped them without seeking advice. Our doctors were in Christmas holidays! Thanks but three hours going to be difficult because there is two many of them and very hard to start my day like that.

77706170 profile image
77706170

Hi,I would see your gp and take it from there,and continue taking your urso as you need it to slow the proccess of pbc,it's so frustrating,good luck 😊

Evaibrahim60 profile image
Evaibrahim60 in reply to 77706170

Thanks I will

GrittyReads profile image
GrittyReads

See your Doc and insist on some investigation into the cause of the rashes.

However, don't stop taking the Urso. It is the main treatment for PBC, apart from meds for non-responders to Urso (and even those meds have to be taken with the Urso ). Urso slows the progress of PBC, and without it your liver will be attacked, more and more, by the PBC.

It is only because of Urso that PBC has stopped being seen as such a dangerous condition.

Apologies for preaching, but it is never advisable to stop any medication without first (or at least simultaneously) seeing your Medic.

Take care,

Gritty.

Evaibrahim60 profile image
Evaibrahim60 in reply to GrittyReads

Thanks very much GrittyReads but I fed up two years is a very long time and couldn’t take it any longer. Soon I I’ll see my GP and look on to it thanks

gwillistexas profile image
gwillistexas in reply to GrittyReads

Ocaliva can be taken alone for people who can’t tolerate Urso

gwillistexas profile image
gwillistexas in reply to GrittyReads

Ocaliva was formulated to help those who can’t take Urso & those who need something extra. European countries had a high mortality rate among people with PBC who could not take Urso & were left with nothing. From what I’ve read, that was one of the main reasons Intercept Pharmaceuticals got busy with an alternative.

Evaibrahim60 profile image
Evaibrahim60 in reply to gwillistexas

Thanks gwillistexas

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