New member introduction

Good afternoon. I have recently been diagnosed with lupus and already have autoimmune hepatitis. I also have suspected Sjogren's syndrome although anti Ro and Anti La autoantibodies were negative. I take mercaptopurine and now also Plaquenil. Current symptoms are aching all over with occasional shooting pains and extreme fatigue. Also pain in one eye and aching in the upper right quadrant of my face. I am looking forward to Plaquenil taking effect, which the rheumatologist says will take 3 months. There is a strong history of autoimmune diseases through my family and I would be happy to be involved in research. I hope to be able to exchange helpful information with the community. Thank you all in advance.

[mstr]

Hi Welcome to the site I hope your placquenil kicks in pretty quickly for you too and you can some reprieve from symptoms. x

[Hidden in reply to mstr]

Thank you very much. I'll keep you all posted.

[Paul_Howard Partner LUPUS UK]

Hi Bitternwatcher,

Welcome to the community. I hope you find the site helpful. We have a lovely bunch of supportive people here.

If you would like a free lupus information pack, please send me a private message or email [e-mail] with your name and address.

I post about any research studies seeking participants in the forum, so please keep an eye out if you want to get involved.

[Hidden in reply to Paul_Howard]

Thanks Paul. The more research that is carried out the better, so I shall watch out for any studies being conducted. Not many people seem to know much about autoimmune hepatitis, which I also have, as it is quite rare so there isn't much incentive for research. I understand that it is often accompanied by lupus. I would be interested to know if any other members of the group suffer from both conditions.

[Paul_Howard Partner LUPUS UK in reply to Hidden]

If you post a new question, all the members will get an email notification and I'm sure you'll get some responses from other people with autoimmune hepatitis.

[bluebell99 in reply to Hidden]

Hi

I have lupus and auto-immune hepatitis. The AIH was diagnosed about three years after the lupus. An ultrasound scan found large flecks in my liver so rheumy referred me to a gastro-enterologist and they both worked together.

I was prescribed azathioprine and all was well for about 5-6 years until I developed renal cancer and it had to be stopped to give my immune system a chance to help fight it.

Surprisingly the AIH has mostly settled, still having out of range ALT, ALP and GGT, but not in the very high numbers I had before.

I am also in remission from the cancer.

Oddly enough I still miss the azathioprine as it helped with the aches and pains and made me think so much more clearly. In fact I gained a History degree with the OU. I know I could not do it now, shame.

Rheumy refuses to put me back on it so will just have to put up with the memory problems and not thinking things through properly.

[Purpletop in reply to bluebell99]

Have you asked your Rheumatologist whether you can try Mycophenolate Mofetil instead of Aza? I was put on MMF directly because my liver tests are usually out of range and Aza may already cause toxicity in healthy liver, let alone an inflamed one.

MMF didn't resolve all the symptoms but it is much better than without.

A quick question - do you know what caused the cancer? I.e medication or the autoimmunity? Everyone here is worried about propensity to cancer due to medication or lupus.

[Hidden in reply to bluebell99]

Hello Bluebell 99 and thank you for this. I'm so sorry to hear about all your health problems and so pleased you are now in remission from your cancer.

Before my AIH was diagnosed I was experiencing extreme stress at work and had pains all over my body. I was then hospitalised with jaundice, and diagnosed AIH (but not before the A tried and E junior doctor tried to tell me I was an alcoholic, for which there was no evidence and which I am not, and wrote "ETOH" on my hospital notes). I spent 5 days in hospital, had a live biopsy and was then put on high does of prednisolonefor about 4 weeks, which made me feel as if I was in orbit, then transferred to azothioprine. My high AST/ALT readings went back to normal within 3 months, but the azathioprine supressed my bone marrow, so they reduced the dose and my AST shot back up and smooth muscle antibodies re-appeared in my blood. They transferred me from azathioprine to mercaptopurine (50mg/day), which seems to be working. However, my GP will not prescribe this, so I have to go to the clinic regularly for my prescriptions, inconveniencing everyone (especially me). The aches and pains then came back with a vengeance and I developed a facial rash, dry mouth, mouth ulcers and headaches (which I had had before, and been diagnosed by the GP as having sinusitis), so the gastroenterologist suspected a connective tissue disorder and sent me straight to the rheumatologist who diagnosed Sjogren's and lupus (because of ANA readings and symptoms including completely dry eyes).

The gastroenterologist has left me to self monitor by having regular blood tests from the GP's surgery, checking my readings and adjusting the mercaptopurine as necessary. I am to contact him if I have any concerns while doing this.

Meanwhile, the rheumatologist has put me on hydroxychloroquine which he says should start taking effect in about 3 months, so I am looking forward to that. I am finding having a full time fairly demanding job increasingly difficult but am struggling on. My main concern is my mind being less sharp than it was, so I understand what you said about this. I forget what I am saying half way through a sentence and cannot remember words. Doing crossword puzzles is I think helping my brain stay engaged - I do one first thing every morning.

I am worried about the effect of Sjogren's on my eyes and mouth hygiene, so have made an appointment with the hygienist (I shall do this regularly) and the optician. No-one has told me to do this but it seems sensible.

What I have discovered is that the specialists don't really have time to talk to you about your illness and it really is up to you to find out everything you can and then act accordingly. That's why these self help groups discussion boards are so useful.

Sorry to ramble on and thank you so much for answering my question about autoimmune hepatitis, people who find out I have got it automatically assume it is a) infectious and b) caused by alcohol abuse (even doctors in A and E, see above) and I find this quite depressing!

[bluebell99 in reply to Hidden]

Hi Bitternwatcher

I seem to have everything that's related to auto-immune, so it wasn't a great surprise to have AIH. I was getting fed up with questions from the docs about my alcohol habits, (the odd drink with summer bbqs, and birthdays). I even told one doc I was not in denial!! He just raised an eyebrow as if he had heard that excuse before

The aza was very effective for me, I understand it can make AIH worse so is very carefully monitored with regular blood tests. I felt much better with it.

I don't think there was a correlation with aza and my renal cancer. The rheumy made a note of it and he said it was unlikely, the cancer with lupus tends to be lymphoma. On further investigation there is supposed to be a link between long term, high dose steroids. I am on 7.5mg and trying, (unsuccessfully) to reduce them. I have been on higher doses but for crisis times like acute asthma.

I think it was just one of those random things.

I always get a call from the surgery if a new doc has seen the most recent blood test. They get very alarmed and request further tests. I have to explain that it is all under control.

Hope this puts your mind to rest.