Hope someone out there can offer some light at the end of my tunnel. I have come off hydroxychloroquine due to severe vertigo.

[janann]

Have had total hip replacement with bone grafts made complicated by lupus and now my blood results on my liver are bad so cannot start on azathioprine. Has anybody had bad results which then recover enough to get on other meds? or am i going to just struggle with my Lupus unmedicated? Could just do with some reassurance. Thanking you for listening xx

[Purpletop]

I've had bad liver tests for the past 2 years but they are now mostly ok - I'm on hydroxy and now mycophenolate mofetil (CellCept) because, as in your case, the aza is liver toxic. At the moment the liver tests are not bad, though I noticed a slight increase in Gamma GT but I'll monitor it and see how it goes. I'd like to be able to stay on MMF if I can but we'll see how it goes with the liver. But to help it along you need a lean diet and no alcohol - hopefully then the liver will cope better with the medication. Have you asked your rheumatologist for alternative medication?

[bluebell99 in reply to Purpletop]

When my Gamma GT levels, ALT and AST(?) results were very high I saw a gastro-enterologist who, after an ultrasound diagnosed auto-immune hepatitis. He consulted with my rheumatologist and the Plaquenil was stopped and azathioprine started. The medication was right for me and is a known therapy. How does your doc know you are not able to tolerate it? Is there a specific test?

I certainly felt much better, the LFTs were much improved and now I am off it. I do miss it though as I felt less wooly-headed when I took it.

[Purpletop in reply to bluebell99]

Aza is funny in its effect - it is very useful in auto-immune hepatitis but other than that and PBC, it becomes toxic to liver. Rheumatologists are usually in a conundrum when deciding what to prescribe. In my case both my rheumatologist and hepatologist agreed that it is safer to use Mycophenolate first and see how I go.

[janann in reply to Purpletop]

Azathioprine was the next step of medication. I don't drink and eat a good diet but if it's the lupus attacking my liver i need something to dampen it down and my liver may recover so i hope the scan shows no damage and the blood results improve and i may get on something to help as i am struggling x

[janann in reply to Purpletop]

The Azathathioprine was the next drug of choice but my liver results were too bad to even consider it at the moment. I just hope the scan shows no damage then they may go ahead with it. I don;t drink and eat a good diet so i just hope if it's the lupus attacking the liver it stops and moves on to something else and then i can get on something to help x

[madmagz]

Hi I have had bad liver function most of my life due to something unrelated to my lupus so when I needed to have my medication changed it posed a few problems but what was done eventually as I have several allergies to was put me on Methotrexate and folic acid to help my liver to cope with it. I am better than I have been for years! Leading a very full and active life have done some qualifications started doing voluntary work. I am making the most of my hobbies and have recently organised a big fundraising day for LupusUK. It has even been possible to reduce the dose of steroids that I am on. I am not running round like a spring chicken and do still have some symptoms but feel so much better in myself it is great.

Good luck with whatever treatment you get put on I hope it works for you the way the combination of these two works for me

Madmagz x

[janann in reply to madmagz]

I hope they can give me some medication as i had one month of steroids and god i felt so much better but what a come down when you stop them. I hope the scan shows no damage then they may start me on something. Having blood tests every fortnight may also show something so i have everthing crossed and hope i can go on something to get some respite from it. I am glad you have something that works for you as it is a daily struggle which people do not understand. Keep enjoying life as it is so easy to go on a downward spiral of depression x

[janann]

Thanks to all who contacted me. I am hopeing my scan will show no damage to my liver and that my fortnightly blood tests start to show an improvement and i may then be able to start on some medication as i am struggling. I did have a month of steroids and felt so much better but then it's such a downer when you come off them. We just all want to feel we have some sort of energy and to have no pain or stiffness would be amazing. We have to keep plodding on and keep away from the depression and despondancy which always seems to be nipping at our heels x