Liver levels - on Azahtrioprine

[smeackles]

Hi all - hope this is a good or better day for you all from yesterday.

Can anyone give me an idea what liver levels are regarded as normal.

We were told yesterday they were up a bit to 78. I don't really know what "raised a bit" means in terms of what range is normal and what is the high end of action needed.

This is my daughter, 25, been on Hydroxychloroquine since June last year at diagnosis of SLE, and steroids. Started Azathioprine in September and monthly bloods were OK, so raised dosage in December. Been on 100 morning 100 night. Dermatology wanted to increase (I think to 300 a day) and asked Rheumatology. They advised yesterday to just increase to 150 morning and stay on 100 at night and see - I presume due to increase in liver bloods - whilst taking steroids down from 10 for 2 weeks, 9, 8 etc. So we are still adjusting meds to get this initial first lupus flare under control. Hair loss and facial rash are still clear effects, along with joint pain and fatigue.

Not seeing them again till mid March (with monthly bloods ongoing) - just concerned as don't fully know what levels are safe or what kind of continuing increase is alarm bells. They did mention if needs be to move across to a different med from azathioprine, beginning with an M but can't remember the name - but they obviously have a plan to try if this current path goes sideways.

I see from previous posts here and a little research that Azathioprine can come with the possibility of organ issues for some people amongst the side effects - so am keeping on the side of caution.

Any advice from you lovely lot that know this stuff inside out would be amazing.

xxxx

[PMRpro]

WHAT is up to 78? There are several things they measure, you need to know what is what.

This explains:

mayoclinic.org/tests-proced...

and gives typical US ranges for men, the units MAY be different, not sure. The results also should quote YOUR laboratory ranges in brackets after the result.

[RosieA]

If you have downloaded the NHS App to review your results they reference LabsonLine for further information on results. Next to each result will also be the 'normal' range that they use.

If you are concerned, it might be worthwhile contacting your specialist nurse if you have access to one or GP and ask if it would be wise to go back to 2 weekly monitoring. I have been on AZA and when the dose was increased I was asked to go back to the beginning of the blood monitoring protocol - e.g, every two weeks for six weeks and them monthly

I didn't have trouble with my liver but I did with my white blood count. The hospital did monitor it and gave reassurances or asked me to get bloods re-checked the next week.

The other drug that they mentioned might have been Mycophenolate. This may well be my next drug after having to stop AZA.

Hope that helps a little.

[smeackles in reply to RosieA]

Thank you RosieA - sorry delay replying - I will get her to look at her results, this was from phone consult.

Just trying to get an idea of what’s normal, what raised at 78 means in the scheme of things.

Really appreciate hearing your situation - I’ll as her if Mycophenolate was one they said.

Hope you doing well

Xx

[CecilyParsley]

Hi Smeackles, I started Azathioprine ten weeks ago. My dose was 100 mg twice daily. I have suffered severe nausea, bile, gut pain, rectal bleeding, weakness and hair snapping.

Unfortunately due to issues at my surgery and within the Rheumatology service no one except a health care assistant was checking my bloods and she described them as bizarre which did not help my understanding.

A week ago I had to admit defeat and rang the Helpline as I just was gagging over food , itching with very pale beige stools. The Rheumatology Nurse told me to immediately halve my dose as my liver enzymes were high at 365. She told me if there was not a significant improvement in 5 days to drop the dose again which I have done. I am eating better but still itching and nauseous but am seeing the Consultant next week.

I think from just reading here and on the Behcets hub, that many people do not tolerate Azathioprine so it is important that you contact the Helpline Nurses to get the appropriate advice for your daughter.

Good luck xx

[smeackles in reply to CecilyParsley]

Hi CecilyParsley

Thank you for your reply and sharing your experience - I’m so sorry you’ve struggled so much.

I’ve been wary for her on azathrioprine from knowing what it can do. She has been on it since September and aside from some nausea at start (which cleared) she has tolerated it ok. No obvious unpleasant symptoms - other than the ones mentioned which could be lupus, could be the meds. She had monthly bloods which they seem happy with. I spoke to her this morning and she’s feeling fine - on day 2 of 150 a.m and 100 p.m

Just watching very closely as don’t want it to start more severe damage - but I guess being lead by her lack of apparent symptoms and feeling ok in herself at this time.

I hope you get help and meds adjusted when you see consultant next week.

X

[CecilyParsley in reply to smeackles]

I think as a Mum you will always worry especially when the drugs are so drastic on the body. I think if your daughter is eating, no gut pain, pale stools, itching, bile or vomiting it doesn’t seem that the Azathioprine is affecting her adversely. I think people either do very well on it or they don’t. Sadly for me I am one of the latter but I do hope that the next drug will be easier on my stomach.

I would still call the Helpline to get some advice, it will put your mind at rest at least. Xx

[smeackles in reply to CecilyParsley]

Thank you - I will - I do hope the next medication suits your body and you feel more yourself very soon.

X

[CecilyParsley in reply to smeackles]

Thank you so much xx