Hi everyone, I was quite upset and shocked to receive a call from the Rheumatologist nurse today after the 2nd wave of blood tests yesterday.
The consultant has reviewed everything and urgently referred me to the Hepatologist and for ultrasound scan, he says bloods point to autoimmune hepatitis.
Also glucose is abnormal- HBa1C taken today.
I feel ill with lots symptoms and now quite worried.
Any words of advice please ? Xx
Hi Scho12
Yes I have autoimmune hepatitis. I had to have a liver biopsy to get the diagnosis as my bloods did not show this. The bloods taken did show that something was wrong but I had a lot of test and for a long time they all came back clear or inconclusive. So my gastroenterologist requested a biopsy. That then came back with autoimmune hepatitis. My rheumatologist had suspicions it was A H but didn’t want to diagnose until my gastroenterologist was certain. Once I had the diagnosis I was then started on steroids for a few months then I was put on azathioprine along with steroids which was 5 years ago now. I haven’t been able to come off the steroids or the azathioprine as my liver results keep going up and my fatigue keeps getting worse!
To be honest I haven’t been able to find anything that has helped with the fatigue.
I hope your journey to diagnosis isn’t as long as mine and you find the treatment that works for you!
😁
Anniemack1 thank you .
I have only just started on the journey of diagnosis with Rheumatologist. After having a virus and Guillain barre syndrome in January I’ve had other symptoms on and off, flares of there years ago too. But in the past 6 weeks I’ve become quite unwell. Must have had every blood tests in the land! Only had telephone consultations but I feel the rheumatologist nurse is keeping me uptodate well with consultant reviews.
Initially it was considered CTD with positive antibodies abs now so much else occurring too.
Just hope get seen quickly by Hepatology and some medication to help as feel shocking and it’s scary .
Really appreciate your reply
My daughter had autoimmune hepatitis at 7 . I knew I had a family history of Lupus. But never thought at 7 she would have it . She was diagnosed with Systemic Lupus. 10 years later I was diagnosed with Systemic Lupus . She is also a twin, but my younger twin Ashley never had any issues. Only Amanda. I’m having issues with my liver for six months now . I’m praying it doesn’t turn into autoimmune immune hepatitis 🙏🏻🙏🏻🙏🏻🙏🏻
Bless you , I read there was a type affecting young girls. Hope you will be ok. It’s a minefield this autoimmune path xx
M so sorry to hear you’ve had potentially bad news. Auto immune disease just throws everything at you.im thinking of you
Hi,
I've had autoimmune hepatitis - in 1996. I had the SLE diagnosis back then and have had other lupus digestive problems. At the time they cancelled a liver biopsy - and there was no increase in immunosuppression (on 5mg pred at the time) - despite being in hospital with very 'wrong' liver enzymes - I was yellow and nauseas / sometimes vomiting. Thankfully after about 8 - 9 months at home - it resolved itself - and as a GP told me while I was recovering - 'its good thing the liver can regenerate' . Not one of my fondest SLE memories. At the time - if they knew to increase immunosuppression it would have resolved a lot quicker.
I've also had very mild pancreatic inflammation - and possibly bile duct involvement (?) - Ieading to low digestive enzyme production so I have to take Creon when I eat. Please make sure you're Doctors are well on top of pancreatic enzymes !!! This is one innard you don't want inflamed.
The lupus also attacked the lining of my stomach - causing me to not be able to create intrinsic factor. This is needed to digest and absorb B12. Also a slight touch of a slowed digestive tract, so I have to eat small soft meals.
I hope those Doctors find a quick and correct diagnosis for you. Sounds like they're onto it.
X
Freckle1000 thank you that’s a help.
My pain is left side abdomen not right so I wonder med about pancreas too?.
My ferritin is high so too much iron from liver also they said, and cholesterol.
Never had raised ALT AST before, all crept over 6 weeks and very distended abdomen with short of breath, fatigue horrible too. Zero energy.
It’s encouraging that you got it sorted and controlled.
They seem to be on it and GP even called today to discuss it all.
Will see what happens xx
Best of luck to you Sho12. I'm glad to hear those Doctors are working to get on top of whats going on quickly. I hope you get an answer soon.
xox
Hello Scho12
Just reading your post and although I haven’t got the same symptoms or diagnosis as you, I have had not great news too this week from the respiratory consultant so I understand completely where you are coming from and how you are feeling.
I just wanted to say, you’re not alone, I’m thinking of you as will many others on this forum.
Didn’t actually realise what I was signing up for with Lupus.... I certainly do now
Take care of yourself
Sue x
Thank you Sue and thinking of you too. I know what you mean, one minute I’m been told probably SLE and more tests then to this in weeks.
Thank goodness for groups like this or else you can feel a bit alone.
You take care x
Hope all goes ok for you. Keep us posted. Take care too x
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