Experience with LFT's going up and down??

[kgohn]

Hi Everyone,

I was diagnosed in April with PBC. My LFT's and GGT were through the roof--I am talking an Alkaline Phosphatase of 1400. I began taking URSO, and after 2 months, my ALP had gone down to 366 and my AST and ALT were in the high 40's--down from 200 or so. All was well, but just had my blood drawn yesterday, and everything is up again. ALP 650, ALT 160, AST 120. I go to my hepatologist next week. He had a note on my results asking if I had quit taking my medicine--I have not--he is concerned about this spike and says he will put me on Imuran. So my question is--does anyone else's LFTs fluctuate this much, and can someone tell me about their experience with Imuran? It appears to have some not so fun side effects.

Thanks so much,

Katie

[teddybear7]

Just got back from Dr.lfts up for first time.taking medication as directed. Bit worrying as never happened before.checking again in November.

[Hidden in reply to teddybear7]

I think with urso and in my experience you can have the drastic drop at the start like I did but then after several months (mine were ok for the first 6mths on urso) you can see a slight rise in them on the next check.

I know mine have gone up a bit and then down again and in July which was 3 and 1/2 yrs of taking urso they went down quite well to be the best been for some time.

Now I think that other influences can have some effect on taking urso and the LFTs. In the period it is possible anyone having any medications can cause an altered effect on the LFTs. I am not sure here and not a medic but I wonder if having something like the flu jab could alter them temporarily too when taking urso to improve the LFTs.

I have looked at my results from the start of diagnosis and they have gone up slightly and then down again over the last almost 4yrs on urso and I have noticed one thing, they seem to be worse at a certain time in the yr than the other.

Although easy for me to say now been on urso for a length of time, I did wonder when I had a slight rise the first time (late 2011) but nowadays I just dont' bother that much at all. So far I've only had the drop in a 6 month period and then seem back on an even keel.

[Donna2641 in reply to Hidden]

Hi Peridot

I have been on Urso since November 2015 and my LFTs dropped drastic like yours - then in May 2016 a little drop in ALT - again labs this month (August 2016) and alt, Ast and Alk Phos all were a little higher. Seems to be somewhat normal for this to happen? Sounds a lot like what happened to u. I, as far as I know only have PBC not AIH overlap.

Thanks

[Hidden in reply to Donna2641]

Hello Donna2641.

I think it seems the norm regarding a PBC patient having great drops in the LFTs at the start of taking urso and then a slowing down as time passes.

As we know in PBC and even with urso the LFTs might never return to normal though they can do.

I still go with how I feel even though I sometimes feel I'm in the Twilight Zone where I hve this PBC but don't know exactly how I am doing as I do think that the urso can cheat a bit of the LFTs but at the end of the day in doing so it appears to be of some help in taking strain off the liver.

[Junolee]

Hi there. I have been on Imuran for two years now. My consultant put me on it when I was weaning off steroids. On Urso as well. Due back in December but bloods have been progressively better each visit since diagnoses May 2012. Fingers crossed will be ok next time. Re: side effects of Imuran, initially made me sick so used to take last thing at night. Now, no problems. Tolerate it v well. Notice nothing else really.

[Hidden]

Hello kgohn.

I was disgnosed with PBC aged 46 back in Dec 2010 and taken urso ever since.

Now the first time I had the LFTs taken along with the GGT following starting urso would be around 6wks later and I got a good result. My following one 3mths later was also quite good but then I had a change in them and they rose a bit and then a bit mroe and then 6mths on again they had dropped once more.

Without looking my ALP has never been of your reading, think mine hit the 600 mark prior to diagnosis but some of the LFTs had come down slightly naturally 3mths prior to starting on urso.

In the period since 2011 my LFTs have taken a bit of a climb and then a drop. The GP was concerned later 2013 due to the fact the LFTs had risen on the two times I had the LFTs taken in 6mths so I was asked to have them done again sooner than 3mths at the beginning of the year when I had a short course of iron tablets and they were rechecked. They were found to have come down as did the ones I had done again in July this yr. It seems looking at mine if I was to make a graph they would go up and down and make a bti of a wavy line.

I have been informed in my case though that they are panning out what is considered normal for someone with PBC as we are not expected to have normal LFTs (though some can taking urso).

Though you haven't said I do presume that the only med you were taking at the time you state the LFTs were rising was just urso and no other new medications. Other medications can have an affect but the doctor would be prepared and know this.

I know from what I have gathered from having PBC is that urso tends to be taken for so long before some evaluation as to how it is doing for a patient can be seen.

[teddybear7]

Thanks for all the replys. Seems a bit of a mine field. My concern was that it's the first time ever either with or without urso I've had abnormal lfts. So it's all a bit new to me. I've done everything they've asked. Lost 3st8lb, now a healthy bmi. Eat low fat & healthy T total & always take my urso. Going back early November so we'll see what they're like then. Oh & no other meds and bloods were before the flu jab.X itching has gone up too. Driving me mad.