Shingles!!!!

[Sandie1]

Hi everybody

Here I am into the second week of shingles, so painful, I am taking 3 lots of tablets and cream, I have booked to see my doctor to ask for tablets instead of capsules, I worry I should be taking some form of URSO, does anybody not take anything, if so are they ok ?

[GrittyReads]

If you have, definitely, been fully diagnosed with PBC, then (for the moment) the only drug to take to help slow down its progression is Urso.

As others on here said to your earlier post (a few weeks ago) quite a significant number of people seem to find the original 'Urso falk' better than the later generic drugs, so it worth talking about this when you see your usual GP.

I realise that the shingles will be making you feel awful, and that you are waiting to see your usual doctor - and he speaks English - but it would help to sort out the 'Urso' drug issue, and get back to taking it, as soon as possible.

Are you a member of the PBC Foundation? they host this 'PBC' site on 'Health Unlocked' and there is a link to their website at the top of the page. This will give you the email address and phone numbers to talk to their trained advisors. You would also get all the onsite explanations about many various aspects of PBC and urso, and if you join, you get a factfile and other helpful info.

I just think it would help you to have someone else to talk to, who really knows their stuff, and to try and learn as much as possible about PBC.

I hope it all gets sorted soon,

Take care

[emerich]

Hi Sandie1, after a heart attack last september blood tests finally led to being diagnosed with pbc.I was prescribed urso (brand Destolit) but after a week of taking it had a severe allergic reaction and had to stop. After worsening liver function test results I also had to stop statins. At present having no treatment for pbc but on 2 monthly blood tests to monitor things . Next move seems to be a liver biopsy if test results get worse, not sure how that would help, or what next move would be. I've not had pbc symptoms apart from days feeling worn out, although gp says thats understandable because of the lft results. Like you I'm worried but have to go with the gp's decision that no statins is better than damaging the liver more. Hope you can get somewhere when you see your gp. Have you had pbc symptoms? And have you already been prescribed urso before shingles?

[Hidden in reply to emerich]

Hello emerich.

It's quite bizarre that we all seem to have varying experiences of the urso.

I was diagnosed in Dec 2010 and started taking urso which was brand Urdox 300mgs. I had initial side-effects but after the 3rd month of taking the tablets and improved bloods I seemed to be on par with them. I've never actually seen the urso as a medication but more of a supplement as basically we are adding a component of bile to our digestive system.

At some point the original Urdox had the brand name dropped as it was being produced generically as I found (the brand dropped off packaging but was still printed on the white tablets) but when I checked out the ingredients at a later date after feeling puzzled as I somehow knew the tablets seemed to have changed, the ingredients were exactly the same being generically produced by the same pharmaceutical. I had no problems taking the Urdox but then summer 2013 the 200mgs were withdrawn due to overseas production issues and to date the pharma has not had their licence reinstated.

I had to have the urso in 150mg tablets then. My script was always written generically so it was a case of I could or might not receive a brand. I did get generics but they gave me such bad heartburn that persisted for more than 3 months, so much so I had to ask for the brand which was Destolit. I have had no problems myself taking the Destolit. I do feel with the medications that it is the fillers that can be an issue and not actually the ingredient itself. I was reading about the difference between generics and brands recently and the component chemical (in our case ursodeoxycholic acid) is exactly the same whether it be brand or generic, it is the fillers that can vary. If a generic is found to absorb the same amount of chemical in the body as the original brand then it is found to be a cheaper alternative for the NHS in the UK.

[SimbaTutor in reply to emerich]

Emerich, I use a combination of 3,000mg fish oil and 500 mg niacin daily to help control cholesterol per the recommendation of one of my doctors. Perhaps this information will be helpful to you since the statins are not an option.

[emerich]

Thanks SimbaTutor, I've started taking omega 3. Got cholesterol result of 5.2 today. It was 3.9 while I was on 80mg atorvastatin.ideally after heart attack it should be under 4. I've been called in by gp next friday so will ask about the niacin.