Azathioprine - what's the point?

I have autoimmune hepatitis (diagnosed June 2018) for which I take 75mg of Azathioprine. Yesterday I had my first fibroscan. The nurse had to do it about 3 or 4 times because something was wrong with the machine & when she was explaining this at the end I looked at the screen & saw it said 261 7.7. Dr Google tells me this isn't good at all. I also discovered that azathioprine can cause liver damage - so why on earth is it prescribed to liver patients? Why didn't anyone advise me of the risks? I have to wait 4 weeks for a consultation so have to live with the anxiety until then.

[AyrshireK]

Hi Miss McQueen, have you had a previous fibroscan to compare this one to?

I am wondering why you think the aza has done something to your liver, it is prescribed to keep your immune system from flaring and causing damage to your liver. If you have had a previous scan and this one is higher then perhaps there have been times when your liver has been flaring and causing damage.Has your condition previously been staged i.e. have you been told previously what sort of condition your liver is in?

The scores posted if the first relates to CAP score (cap is scored from 0- 400 and relates to fatty build up in the liver, a score of 261 CAP shows that you have a medium degree of fatty change in your liver - this isn't uncommon but isn't to be ignored. if you are perhaps carrying a little extra weight (not uncommon if you've been on pred for any length of time) then that can account for fatty build up. This can be reversed with a good healthy diet and a good exercise regime.

"About Your CAP Score

Your CAP score is a measurement of fatty change in your liver. Your healthcare provider will use your CAP score to find out your steatosis grade.

The CAP score is measured in decibels per meter (dB/m). It ranges from 100 to 400 dB/m. The table below shows ranges of CAP scores and the matching steatosis grade and amount of fatty change.

CAP ScoreSteatosis GradeAmount of Liver with Fatty Change

238 to 260 dB/mS111% to 33%

260 to 290 dB/mS234% to 66%

Higher than 290 dB/mS367% or more"

As for the 7.7 - if this is kPa and therefore the fibrosis score this only indicates F2 fibrosis for someone with AIH as the underlying condition. Charts have only recently begun to show a bar for the scores when AIH is the causal factor so it is hard to find on line though is frequently shared on the AIH support group page on Facebook.

Where AIH is the causal factor of the liver fibrosis the score bands are:-

F0-F1 = 0- just under 5 kPa

F2 = just under 5 kPa and 9.5 kPa

F3 = 9.5 kPa and 15 kPa

F4 = >15 kPa

It is possible to reverse or at least prevent the worsening of this fibrosis providing your liver condition is controlled and you arn't flaring, if you can do anything about the fatty build up too then you'll prevent a 2nd attack on your liver (i.e. AIH and fatty liver disease).

It's not all doom and gloom, leave Dr Google alone as it will always convince you of worse case scenario. Carry on with your medicinal regime and discuss with doctors at your consultation. It is more likely to be your underlying health condition causing the fibrosis rather than the Azathioprine.

If you do Facebook and arn't already a member the wonderful AIH support group on there is really good for supporting you with your condition and meds - nearly 3000 members now, all of whom either have AIH or are (like me) supporting a loved one with the condition. It's a private group so no one else on your Facebook feed sees anything you share on there. Well worth joining. facebook.com/groups/2293328...

All the best,

Katie

[Hidden in reply to AyrshireK]

Thanks. This was my first fibroscan, when I had a biopsy they only said there was some liver scarring and I'd need a scan to find out how much but for whatever reason I only had this scan 3 years later. I've had ultrasounds before but they never tell me the outcome. I have never been informed of any stages so have no idea where I started. I assumed the meds cause liver damage because if you look up medication which can cause liver damage azathrioprine is on the list. Plus in the info leaflet that comes with the tablets it says a common side effect (1 in 10) is liver disease.

[AyrshireK in reply to Hidden]

If you had scarring on biopsy that's more damage that the fibroscan is suggesting now which is just into F2. It's going to be the AIH that caused the fibrosis rather than aza and if it's saying F2 now rather than F3/F4 then it may be your liver has actually improved some way since the initial biopsy since F2 isn't scarring but mild fibrosis.

If you were to read the patient information leaflet for any tablet or medicine they are all in some way contraindicated for liver issues, however, aza is the most commonly prescribe immune suppressant for AIH so that's unlikely to be doing you any harm.

Katie

[Hidden in reply to AyrshireK]

I don't know about that as I'm more symptomatic now than I was back then. Anyway I'm sure many things led to the damage, I just wonder why they give people meds they know can do further damage. Thanks for your responses.

[AyrshireK in reply to Hidden]

Some people can't tolerate azathioprine and there are several alternative immune suppressants, obviously something to discuss with your doctors. Lots of the folks on the facebook page have experiences of the different meds.

My hubby has never been on immune suppressants because sadly he already had decompensated cirrhosis before it was even discovered that he had anything wrong with his liver. His AIH is considered burned out now, it did it's damage without any symptoms being evident and by the time it was found he was vomiting blood from burst varices. His treatment is all to do with cirrhosis side effects now.

Hope you get good support from your doctors when you see them.

Katie