Liver Panel Results & Urso

[WendyMarie]

Wonderful news! After almost 8 months on URSO, my liver panel bloodwork result were ALL within normal range! First time in over 8 yrs. So, Urso, DOES work!

[Hidden]

Hiya WendyMarie.

Your posting intrigued me!

So pleased that your bloodwork has all gone to within normal range, hope it continues as such, I really do.

What I want to know now, you mentioned that they have got to that for the 'first time in over 8yrs', well do I read that right in thinking you have been on urso for this length of time?

Is that how long since you were diagnosed with PBC?

My results have come down considerably from what they were Dec 2010 when I started on urso but I've had a slightly down and then up but not dramatically ever since.

Has your LFTs slowly declined over the years on urso then?

Can I be cheeky and ask you how old you are? I'm currently 49. Thanks.

[WendyMarie in reply to Hidden]

Hi Littlemo...I was diagnosed Dec. 2013. I started Urso Feb. 2013. When I reviewed my bloodtest from the last 8 years, I saw I have had elevated ALP for at least those 8 yrs., maybe even longer. I do not have copies before that. The first 3 months on Urso, my ALP was higher than it had ever been before, up to 574. Now it is 110. I know that ALP will fluctuate greatly, just like blood pressure. My liver specialist told me when it remains consistently normal for over a time span of a year or more, then I will know its definitely working. So, the data graph will look like a roller coaster, up & down. It its lower more than higher, the meds are working. That is why the doctors are not too concerned with ALP, mainly just the bilirubin status. However, he did say, if the ALP remains below 200, consistently, the rate of progression will be so slow, that a person will most likely die WITH PBC & not FROM it. Most people never reach transplant stage, according to all 6 doctors I have seen. I am 57.

[WendyMarie in reply to WendyMarie]

Sorry, the above post was meant to be addressed to Peridot.

[Hidden in reply to WendyMarie]

Thanks for the reply WendyMarie.

Given since I started on urso almost 3yrs ago now, it's not been said to me that there appears to be any problem in using urso. I know we all hear differeing opinions from the medical profession but it seems that if the bloods do start to come down even if at a slow rate within the first year on urso then it a pretty good sign.

I had been on urso just short of a year when I decided I didn't want to see the hospital consultant again for the present. This was Oct 2011. He agreed to discharge me on the understanding that if there was ever cause for conern in the future I'd return back. In his discharge letter to the GP of which I got a copy he said that my bloods were at the time 'stable' and to continue taking urso and having repeat bloods at intervals to continue monitoring.

Given we are in Oct shortly, two years on almost from seeing the hospital consultant on my discharge, I've got pretty good bloods still and my bilirubin at May check was still panning out in normal range.

You sound like you got off to a racing start on urso WendyMarie. I didn't get the same results that you got 7 months on urso but I did pretty great at the start myself.

I really do not bother at present as I have that feeling I'm doing pretty great myself and as I've probably mentioned on here now more time than I've taken urso (ha!) that the itching has subsided somewhat to how it was originally that'll have to do for me for now.

[Anne123_45]

This is brilliant news.. Gives us all hope

[WendyMarie in reply to Anne123_45]

I am so glad this has helped other with hope. Please read my other post in regards to this news I posted about the ALP levels.

[lainey67]

That is fantastic news Wendymarie,i totally agree urso does work i had my result's last week and mine are now all normal,ggt 44, alk phos 112 and my billirubin is 6.I have only been on urso for 1 yr,the doc said that i now have same life expectancy as some one with out pbc,i am so pleased for.xx

[WendyMarie in reply to lainey67]

My liver specialist told me if your ALP remains below 200, you are in a Bio-chemical remission, which means the rate of progression is so slow, a patient should live a normal life span & most likely die with the disease & not from it. I am happy for you as well, Lainey.

[Magnolia]

Great Wendy! So glad it's working for you. I believe it works also, for all of the years I've had this, and taking it myself with good results.

Magnolia

[WendyMarie in reply to Magnolia]

Thanks Magnolia. Prayers & a positive attitude helped me also.

[Val02]

Well done you! URSO worked for me as well. It took a year but it brought my bloods into the normal range. Great news!

[WendyMarie in reply to Val02]

Thanks Val. So happy for your results as well.

[florrie505]

Thanks everyone!

It's news like this that makes it more important to take all our meds. regularly and on time. Good things come to those that wait, it definitely did for you, well done! xxx

[Anne123_45 in reply to florrie505]

I agree.. I also think sharing good news like this in this fantastic forum distresses the rest of us somewhat, which in turn improves our health

[WendyMarie in reply to Anne123_45]

Yes, a positive attitude & prayers have also helped me Jpmac.

[WendyMarie in reply to florrie505]

Thanks Florrie

[CinSF]

Did you make any lifestyle changes? I ask because I was diagnosed with PBC in July after years of PFTs that were off and finally a positive myocondrial reading of 141. I read up on this particular test - AMA - and was 'comfortable' with the finding as it stated that test is 98.6 percent accurate.

Fast forward four months to some retesting and a visit to a specialist. Now my LFTs are all normal or mostly normal including that test that is never wrong. The AMA is now negative.

I've been on Urso since July, but it is more likely I helped myself by stopping my nightly intake of white wine. I am a small woman so my three glass a night habit was too much for me to handle.

Yesterday I had an ultrasound and while I do not have the write-up from the doctor yet, the tech shared her findings. My liver looked completely normal to her with no damage she could detect.

I will probably be advised to stop the Urso as soon as my specialist reviews everything and I suppose if the LFTs rise, we will take a hard look at the Urso, but I think he will conclude it's more likely the alcohol threw my values off.

If my liver problems turn out to be completely alcohol related, I wonder what that says about the tests used to diagnose this disease.

[littlemo in reply to CinSF]

It was interesting reading that as I for one have never been a regular drinker so I know my abnormal LFTS were def not done to that. I know when I was diagnosed it was on 3things elevated LFTS, positive AMA and my symptoms which at that time were severe itching chronic fatigue and joint pains. Were you symptomatic at the time of your diagnosis? I have heard that some people( though quite few) have had a negative AMA but were diagnosed on symptoms, elevated LFTS and on liver biopsy.

[littlemo in reply to littlemo]

That was supposed to read "not down to that" not done!

[CinSF in reply to littlemo]

I had no symptoms when I was diagnosed, but the AMA was taken as the "gold standard" of tests for PBC so that diagnosis seemed right. I have had some unexplained bruising and some tiny under the skin bleeds I thought might be liver related, but perhaps not. My blood clots normally according to one other test.

After this experience I wonder what other environmental factors might elevate LFT values (other than alcohol) that might end up in a PBC diagnosis especially if people are asymptomatic and/or have values that return to normal or near normal after their initial diagnosis. It's worth looking into.

[WendyMarie in reply to littlemo]

I am asymptomatic, diagnosed 9 months ago, based on positive AMA & elevated ALP. The first AMA test was negative, the 2nd was slightly positive. I have had elevated ALP for at least 8 years, maybe longer. I started on Urso, Feb.1, 2013. The first 2 months on Urso my ALP jumped higher than it had ever been, up to 574. Now it is 110.

[WendyMarie in reply to CinSF]

Hi CinSF, The only lifestyle change I have made, is that I quit smoking in Jan. 2013, since smoking can accelerate any illness. I do still drink, socially, occasionally. My liver ultrasound & biopsy were normal .I have always eaten a healthy diet & I am very active, but that does not mean I go to the gym or run, etc. My AMA has been positive, negative, then positive. The liver specialist told me that AMA & ALP will fluctuate, just like blood pressure. If I continue to receive normal range results for a period of a year or more, only then we will know the Urso is working. When I was first diagnosed, I did not drink for 4 months. My ALP was higher then, than it had ever been before! I resumed drinking, on occasion, 6 months ago, & now the ALP is normal. My doctors told me that alcohol does not cause PBC. If you are in stage 3 or 4 PBC, then you must not drink alcohol, since your liver is compromised already. If you are in stage 1 or 2, it is ok to drink in moderation.

[Anne123_45 in reply to WendyMarie]

It's good to know you still drink moderately socially.. I'm stage one and do this i was diagnosed in may.. So I've no idea how this will affect my results.. I do know I drink a hell of alot less than I used to. If I didn't have these drinks socially I'd have no social life.. As I'm living away from home this would stress me more as I'd not be able to mingle with people.. As I'm young that tends to be what people do to socialise. My specialist said it's ok to drink in moderation..

[Hidden in reply to Anne123_45]

Hello Jpmac.

Although I completely quit alcohol after my first abnormal LFT in early 2010, I do agree that if you do like a little tipple socially every now and then I can't see any harm that it would do.

I know for myself now, I won't bother. I was never much of a drinker prior to 2010 and I really do not think about it, nor miss it.

I know if I did drink the odd one socially, I think myself I'd be more apt to have a drink in the short period after having a repeat blood as that way abstaining a month or two prior to the next LFT will probably give a more accurate reading than if you had had alcohol in the short period of time before one was taken, if that makes sense.

[Tracy181 in reply to Anne123_45]

My doctor told me I could drink occasionally but no more than 3 drinks in one sitting...

[Hidden in reply to CinSF]

Hello CinSF.

Reading your posting, you was diagnosed with PBC and AMAs are normally present in someone with PBC.

I can't help wondering a couple of things. I do feel that anyone partaking of alcohol will cause their LFTs to increase slightly, moreso in something like PBC. People who do not have PBC or other certain liver conditions can have an increase in the LFTs after a bout of drinking but then abstainence for days on end to follow can then result in them going back to normal.

My liver looked normal on the scan I had in 2010 when I presented to a doctor with itching and at the time fatigue (no longer have the latter). On diagnose Dec 2010 I was started on urso due to abnormal LFTs and also symptons of PBC plus positive AMAs.

Now in PBC the AMAs can at a future stage show up as negative. They can appear and then disappear. I do not want ot disillusion you at all but often if it is questionable following a negative AMA test for a patient with abnormal LFTs for PBC diagnose a liver biopsy is taken.

If you do have PBC then you would be classed as asymptomatic, your bloods would be monitored but if they are normal each time it doesn't seem likely that you will be prescribed urso.

The good thing if you can call it that is if you do have PBC then it could be possibly the fact that yours had just taken that u-turn and gone into a remissive state never to return or restart up.

If this is so, you have that heads up now, you can look after yourself being aware that the bloods could change due to perhaps having PBC or a reaction to alcohol. At the moment it sounds like you are in pretty good shape and I hope that you continue to be so.

[donna01 in reply to CinSF]

I find your story rather fascinating and think that is awesome! I am curious, were you a smoker and did you change your eating habits as well?

[WendyMarie in reply to donna01]

Yes, I was a smoker. I quit after PBC diagnosisis 19 months ago. No, my eating habits have not changed. My hepatologist said it was not necessary, to be on any special sort of diet.....just eat healthy. I drink a few beers on weekends.

[Disy]

Hi Wendymarie

that is wonderful news for you. It is lovely to hear that the Meds are working. I say keep doing what you are doing because it is working for you. This baffling disease with its different symptoms and different levels of them for each and every one of us keeps us on our toes so I say "Well Done"

Take care and keep smiling.

Disy

[WendyMarie]

Yes, Disy, all auto-immune diseases affect people differently. I also have had Multiple Sclerosis for over 27 years & I have only experienced 2 attacks during that time. Most MS patients would have advanced disabilities by now, but so far, I am completely normal. So that proves the large difference in the progression of auto-immune diseases. I also know that the rate of progression can change instantly, for an unknown reason, on meds or not, for the better or worse, so that thought is always in the back of my mind. I go on with life & never allow myself to worry about whether or not I may or may not have another MS attack. That's like worrying about having accidents, etc. If I do, I will cross that bridge, if & when I get to it. That is the attitude I try to take & hope it helps others.

[Anne123_45 in reply to WendyMarie]

What a strong woman

[Puddles]

Hi WendyMarie,

That is great news your blood tests have improved so much on Urso and also very encouraging to hear your doctor's interpretation of that regarding slowing of the disease. My LFTs were only slightly elevated to start with but still fell quite dramatically after just 3 months on Urso.

And what an amazing attitude you have in dealing with both MS and PBC,

All the best

Puddles

[Hotshot]

I have been on Urso for the past three Months had my liver test results today and they are higher then before

I started the medication, I feel very disappointed, dose this mean Urso will not work for me

[Tracy181]

Awesome!