Hi everyone

[mld78]

I have had elevated ALT scores recently, nurse rang when they were 53, had a blood test 2 weeks later and they had risen to 68, two weeks later they’re now 100. I’ve been told not to drink. I assumed the nurse was meaning alcohol, but I have about three glasses of wine each year. I’m now wondering if she meant drinking anything. I tried to get all the other blood test results but she said they’re all fine. I’d prefer to have the numbers! It’s the rheumatology nurse who is contacting me, do you think I need to see my GP to see if I need referring to another specialist? I stopped my rheumatoid arthritis medication about 7 weeks ago. I am also having loads of nose bleeds, and really swollen calves, ankles and feet, but the RA nurse wasn’t bothered. What would you do in my situation?

[AyrshireK]

Re. drinking - it's alcohol she was talking about, maybe she has assumed you take more than your limited annual intake (the amount you partake in isn't contributing to this rise of ALT). It would be dangerous not to drink anything at all.

Having one auto immune condition (RA) indicates you have an over active immune system. Something you might want to investigate is whether you have an issue with your immune system potentially contributing to this ALT rise.

Having said that - although your ALT is elevated it isn't massively so - have you been fighting an infection recently? Even something as simple as having an ordinary bug or infection can cause small rises in ALT. Potentially the case here in that your other liver bloods are normal.

Katie

[mld78 in reply to AyrshireK]

Thank you for replying. I don’t think I have had an infection. I am trying to process what she said and suddenly felt a little on my own! And thank you for saying that the ALT isn’t that high. She made me feel as if it was extremely high and should stop drinking. Thank you for your reassurance.

[AyrshireK in reply to mld78]

In people who are flaring with auto immune hepatitis ALT can run into the many hundreds or even thousands.

What is the reason behind stopping your RA meds and was that a medically advised/supervised cessation?

If you ALT keeps on rising then you'll potentially need to be referred to a liver doctor for examination of why.

Katie

[mld78 in reply to AyrshireK]

I was itching! I couldn’t cope with every part of my body being affected so they advised I stop all my medication. I have taken the RA meds for years and since November I have started having a few side effects. Thank you for taking the time to explain.

[AyrshireK in reply to mld78]

Did you have liver bloods done while you were itching? It's just that itching can be a sign of potential liver issues too.Sounds like repeat tests are definately needed and further investigations.

Katie

[mld78]

yes I was itching so they took my bloods. The ALT has been rising, and the itching is getting unbearable.

[bleeny]

I had fluctuating ALT for many years which no-one paid much attention to as it was only mildly raised. I was repeatedly asked about alcohol intake which I kept telling them was minimal. Eventually I got a diagnosis of autoimmune hepatitis in spite of the hepatologist being sceptical prior to biopsy. I had previously had another autoimmune disease. Once you have one you are more likely to get another although I don't want to alarm you. It might be worth asking for further blood tests.

[mld78]

thank you so much for your response. It’s very helpful.

[Littleperson999]

Hi were you on methotrexate? My dad was on that for (misdiagnosed) RA and it caused his cirrhosis. Methotrexate is known to cause liver damage in some people and the liver has to be carefully monitored while taking it. My dad's doctor was very lax and here we are with a KPA of 16.

[mld78 in reply to Littleperson999]

hi. Yes I am on methotrexate. I have not taken it for three weeks. Thank you for this information. I’m actually on half a dose as I was loosing consciousness when I was on the full dose. I’m seeing the rheumatologist this week and hepatology consultant next week. It would be useful to see them both at the same time!

[Littleperson999]

Ugh so sorry to hear that. It is a nasty drug and I am so upset at the doctors for making my dad take it, particularly as it seems unlikely that he ever even had RA (recent ultrasounds and MRIs show no evidence of active disease or disease in remission). The good news is that 2 months after stopping methotrexate my dad's appetite is returning and he is gaining some weight. I wish you the best with your journey and I hope you can get better soon as well.

[mld78 in reply to Littleperson999]

I hope your dad feels much better. RA is a difficult disease. I started with it at 19 but didn’t have any meds until I was 40. These then caused a stomach ulcer so stopped them. Started DMARDs at 51 but have had issues with them all! Now in remission again but digestive system has been complaining for at least 2 years. Now my blood work is showing stress I’m eventually seeing someone! Two consultants in 6 days. Thank you.