Has anyone not been helped by Urso?

[littysgirl]

First of all, I started this post and lost it. I hope it doesn't post twice. If so, I apologize.

I was diagnosed in January with PBC - sort of. Short version - two years ago my lfts sky-rocketed with no warning. Had no idea of the reasoning. Repeated the test immediately to see if it was just a mistake but they were still high, but already lower. Repeated in a month - same thing: way too high but lower than the first time. Then started checking every three months. My GP/ primary care doctor suggested I see a gastroenterologist. By the time I saw him, my levels were elevated but almost normal. He decided to test AMA and ANA. One was positive, the other was not. Shortly afterwards I contracted pneumonia and when I was in the hospital, they did a CT scan of my lungs which caught parts of my liver. It looked nodular and otherwise abnormal. I did not like the gastr doctor I had gone to so I tried another one who I like much better. He took a cautious route and ran blood tests again - both lfts and the AMA and ANA. Again, kind of questionable results, so he said the only way to be sure was to have a liver biopsy. He suspected I had either PBC or possibly auto-immune hepatitis. I had the biopsy - and incredibly, it was still inconclusive. My doctor sent the results to a liver specialist at Johns Hopkins for a second opinion. That doctor thought it might be an overlap of both PBC and autoimmune hepatitis. The issue is that the two diseases have very different treatments. Then my doctor had me pick up the actual slides from the biopsy and see a liver specialist from Mt. Sinai Hospital in NYC who is doing research on the two diseases. She took the slides to her pathologist and they informed my doctor that they think I had PBC. I can tell that my doctor thinks it's both but he is following the advice of the expert.

I've been on Urso now for three months. I had my first follow up this past week, having had blood drawn the week before. Not only are my lfts not lower, they are higher. I have to say that I'm discouraged. They're not dangerously high but they're definitely significantly higher than in Feb. The doctor said it's ok and frequently it takes longer for the Urso to start working, maybe 6 to 12 months. But I wonder if this means we're treating the wrong disease. I hate taking anything I shouldn't - since it has to be processed by my liver which is clearly not happy.

So I'm wondering, how long did it take for the rest of you to see positive results? Thanks.

For any new people, if you saw my posting when I first started, I had side effects - headaches, flushing and itching - when I first started the Urso. I'm happy to say that all those side effects dissipated within two weeks or less and I have none now, so stick with it.

[littysgirl]

Me again. I'm proof-reading my post and noticed at the beginning I said "the short version" - there's nothing short about that posting! Sorry, I type like I talk - a lot.

[Rockie]

Hi Littysgirl. I am sorry that you had to go through so many tests, and seems as if nobody can pin point the real problem. I live in South Africa .Also difficult to get answers, but I had an E.R.C.P to determine what type of liver disease I have. That was 2009 and those tests confirmed PBC. Nowadays I just take Ursotan ( that is what we get here) and run tests twice a year. I know there is in my case no cure. Liver transplant would not be an option. I was 75 in January. It seems as if the doctors and specialists really try their best to find the right diagnoses for you. Good luck. Sorry I cannot be of help. This is a very lonely disease I have found out. People look at you when they hear liver disease with that look "'she must be a heavy drinker"' and I hardly ever drink alcohol. If I itch, they tell you use this or that lotion, not knowing it is from inside, not your skin. For me the itching is the worst part of this PBC. Keep us posted

[Calogia]

Litty - my results after 3 months on URSO were drastically lowered. They fluctuated for a couple years and now the URSO has stopped working. I am stage 4 and the URSO works better if you take it in the early stages.

Hope you get some answers!

Calogia

[bobbycat in reply to Calogia]

Hi. I started urso late in pbc at stage 4 which I am now...not sure if is working as haven't had blood test for 3 months but I digest food much better on them ..consultant said never to late to take them! We will see.

[Gioielli]

Hi littsygirl,

Diagnosed 6 years ago with high LFT's particularly ALP level and AMA positive. Put on Ursogal and at next check up 6 months later ALP had become to drop slightly. Think Ursogal does take a while to work. Hang on in there. X

[littysgirl in reply to Gioielli]

Thanks to all of you for responding. I'm particularly glad to hear from you, Gioielli, since you also found it took longer to work. That gives me some encouragement. This may sound odd, but I'm kind of hoping that I do have PBC and not the autoimmune hepatitis because most of you seem to be doing so well. The treatment for the AIH involves taking medicine which suppresses your immune system and that sounds very frightening to me. The Urso, as a bile salt, is at least a naturally-occurring product

[Suziebeau]

Hi there, just wanted to chip in and say that yes, Urso can take a while to work, so hang in there! However if you prove to be an Urso non-responder, and a significant proportion of us are, there is an expedited international drug trial for the use of OCA (another bike acid) for use with PBC and the results look very positive. You can see information on the PBC Foundation website, so soon there should be an alternative treatment.

Best wishes x

[PBCFoundation PBC Foundation]

Hello Littysgirl,

I have read your post regarding your diagnosis and your question regarding response to Urso.

If you haven't already registered with The PBC Foundation, you can do so completely free of charge by visiting our website, pbcfoundation.org.uk and following the instructions.

Once registered you will be able to access the Member's Section on our website where you will find a wealth of information and facts about PBC. This is also where you will find our patient's compendium which has been written in conjunction with some of the best medical advisers.

I shall direct message you some useful contact details if you wish any further information or to have a chat with one of our helpline team.

Best wishes

The PBC Foundation