New to this - anyone have lupus attacking liver? - LUPUS UK

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New to this - anyone have lupus attacking liver?

This is my first posting, I'm new here - hope I am doing this correctly :-)

I am newly diagnosed with either SLE attacking my liver or it may be SLE with coinciding autoimmune hepatitis. (My liver biopsy was unusual, so they aren't sure exactly what is going on - was diagnosed after being referred to the Mayo Clinic in MN in February). I am now on prednisone, down to 20mg/day (started at 40mg 7 weeks ago) and just stopped azathioprine as I had a terrible reaction to it (I can go into that if anyone is interested - but moral of that story is this: a high cyclic fever (in relation to what time of day I took the azathioprine) with crippling head/neck and joint pain can be caused by this medication - my local hematologist didn't think it was the meds and would have had me keep taking it and continue being tested invasively for the cause of the fever). I had to google it and contact the Mayo Clinic to figure it out. Scary!) So now I am going to start myfortic (coated cellcept) and hopefully get off the prednisone eventually as I am hating the side effects (can't think, heart pounding, hands so shaky I have poor dexterity, can't sleep, feel ill - no energy, moon face, buffalo hump, weight gain....basically feel as bad as before starting meds, but liver enzymes have normalized, so the doctors are happy)

So anyone tried cellcept/myfortic? Anyone with lupus primarily attacking their liver? Anyone feel like this on 20 mg pred then feel better on lower dose?

Thanks so much for reading and I look forward to finding some people in a similar boat :-)

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Welcome! I’m sorry I can’t help but you are in the right place for lots of advice, sharing and friendship.

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hi - i have had autoimmune hep for 30 yrs and lupus for 25 yrs. my dr says they are diff diseases and i treat them with diff drugs. i take a form or prednisone (endocort) that is easier on your bones, and azathioprine, which, if you can handle, has been a miracle drug for me. I would try it again if you can...get a seasoned doc to follow you...I took pred at diagnosis for a year or so - awful as you say, feel worse than before dx - then have mostly been on azathioprine with no side effects. it works amazingly for me. So My lupus and liver disease co-exist, with no attacking. Maybe yours is diff? Make sure you see specialists - Mayo, major urban centres - as AIHep is rare and needs very specialized care. pls see a bone doc to prevent bone loss from taking pred. they will give you good treatment/advice - important. Sorry haven't been on drug you mention. I hope things improve for you. I am healthy and active with cirrhosis and complications that are managed well. good luck. pls reply if any questions...

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Thank you! So good to hear that while you were miserable on pred you are feeling well now! It has been such a terrible several months and getting harder to keep the chin up somedays. I was excited for the azathioprine - can’t believe I had that reaction... I will look into the endocort. Thanks again. Exciting to meet someone who has had both of these conditions. Especially knowing that you are feeling well & active:-)

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i have had some really low points, but managed to get thru them all. what age are you? and alot of my issues are related to cirrhosis, which you likely do not have (would be seen on biopsy), so that is a huge plus...

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I am mid 40's and no cirrhosis yet, thankfully. So I think that endocort is also called budesonide? I have been wanting to try to switch to that off pred as I have seen that it has much lower chance of side effects. When did you switch from pred to this drug and what was that like? How long to feel better, how expensive? Did all side effects improve? Moon face, weight gain, jittery/shaking, heat pounding, exhaustion, etc? How old were you at diagnosis? I never had any pain or sensation from the liver itself, just a ton of joint pain, fatigue, nausea, and a rash. They caught the liver issues on routine blood work last December. The meds have fixed the rash and the LFTs and bilirubin has returned to normal but the joint pain and feeling awful is worse than ever. Plus now all the pred side effects. Thank you so much for your help.

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I Started endocort in menopause as it is easier on bones. something you should consider given your age. I think the issues you are dealing with on pred will decline when you get under 10mg per day. The higher doses are brutal. I actually treated my AIH exclusively with azathioprine for 20+ yrs before my numbers crept up and they decided to add the endocort. My cirrhosis has been slowed considerably (ie no issues in 30+ yrs) due to azathioprine, so hopefully you will not have to deal with it. The prognosis for AIH is pretty good if you respond to the drugs. I didn't have joint pain from AIH, but from lupus. Again, once i got a a good dose of plaquenil going all my symptoms went away. over the years i have dealt with some minor issues related to lupus, but have managed to live my life feeling healthy and grateful. you will get there. you are at the very beginning, and it is frightening to see your body careen out of control. All will be well, just be patient!

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one last thing for tonight...there is a crazy irony here as i only looked onto this site for the first time in my life a few hours after you posted, and i happened to come across it on the first page i pulled up. I was looking for something related to lupus. very weird coincidence. well, hopefully i can make you feel better. thanks

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sorry..i am a night owl. to answer your questions...I have only been on small doses of prednisone on and off for last 20 yrs, Yes endocort is budesonide. i take a super small dose so can't really talk about side effects of higher does. i was 22 at dx, so it started early. get the lupus under control with a good doc...that will likely be the more challenging one for you to deal with, as the pain is so terrible initially, and there are some weird manifestations (skin, eyes) that can be a drag, but, for me, not lethal. i am surprised your prednisone doesn't improve the joint pain, as it does when i take it. a good rheumatologist will be key for you. Again, there will be a way out of the pain, even tho it feels a bit daunting right now. (I have run 10k, biked 100miles in one day, and played 5 hrs tennis a day while coping with these illnesses, so please have hope. you will find a solution..just takes time...

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Yes indeed, my very cirrhotic liver was causing me problems and was under intense investigation by a top London liver specialist before my lupus was confirmed. It was so bad I was investigated for a transplant. I then ended up in hospital with a severe infection and ascities before a battery of tests there identified lupus. I was started on 25 prednisolone but this amount set my oesophagus on fire....it felt like it had been napalmed. So my stomach liner omeprezole was doubled but then I came out allergic to omeprezole and developed a head to foot rash so I was moved onto Zantac which has worked fine. I could not take Cellcept (two attempts) but could take Azathioprine. This was a great shame because I felt amazing on Cellcept for two weeks before my body could no longer tolerate it. Cellcept was previously a liver transplant anti-rejection drug but, as I write in my book, it is not at all unusual for medication regimes for lupus to be very much a process of individual trial and error. I hope that you can tolerate Cellcept and feel as good on it as I did for a few days. The azathioprine and corticosteroids and hydroxychloroquine steadily improved my liver readings and I was able to reduce my steroids down to the current level of 7.5. I followed a good diet. The liver is highly reparable. I am grateful that my lupus was attacking my liver rather than my kidneys or heart, although it has completely destroyed my spleen. How to reduce steroids is another matter which I will happily go into if and when you need the information. Wishing you rapid improvement, with my very best regards, Lily

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If you were having trouble with cellcept because of stomach issues - you could try Myfortic. It's a type od micophenolate that's easier on the gut.

I take it. I've had lupus hepatitis and lupus attacking the digestive system too.

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Thank you very much for taking the time to give me this information. Most kind thank you....with my very best regards Lily

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I hope it helps.

X

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Yes.

My liver and kidneys are damaged. I was prescribed 60 mg pred and 4 myfortic daily. Pred was reduced ( eventually) to 5 mg which I am on for life.

Recent lft test showed liver is acting up again so may go up to 20mg pred. Having lft done next week ( will be checked monthly)

All the best!

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Hi Lupiliver

I've only been diagnosed with SLE for under a year, think undiagnosed for over 5 but only discover due to Lupus Nephritis being diagnosed.

Only last month my Nephrologist said my Liver results had been poor for the last 5 years with no investigation being done by GP.

Waiting to find out if its NAFLD or Fibrosis of the liver....

I was started on 70mmg Pred and can totally sympathize with the side effects... awful is the only word that covers it.

One thing the Heptologist said to me when I finally saw him was to make sure I drink a minimum of 2 coffees a day as it slows any form of Liver disease down, so this may be something worth considering if you dont already do it.

Other than that I can't help much as I have been discharged from the Heptologist before i even get a diagnosis as he said doesn't matter which form of rhe disease it is as until i go into Liver failure nothing for them to do.

Lose weight, reduce cholesterol and drink coffee...

Joy's of autoimmune disease eh!!

Xxx

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Hi Lupiliver,

Welcome to the LUPUS UK HealthUnlocked community. We offer a free information pack which you can download or request at lupusuk.org.uk/request-info...

According to The Lupus Encyclopedia, liver blood test abnormalities are very common in people with lupus. Around 25% of people who have SLE have an enlarged liver, referred to as ‘hepatomegaly’.

The most common reasons for liver abnormalities in lupus patients are chronic inflammation, medication side effects, severe malnutrition, dehydration and lupus hepatitis. Liver enzymes are usually elevated due to medication side-effects from non-steroidal anti-inflammatory drugs or NSAIDs, alcohol use or fatty liver.

We offer a range of publications on lupus and relating topics such as the skin and bain which you may like to read at lupusuk.org.uk/publications/

Please keep us updated, wishing you all the best.

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