Has anyone had any problems with their liver d... - Behçet's UK

Behçet's UK
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Has anyone had any problems with their liver due to the behcets disease?

I have had deranged liver results for over 12 months which the doctors have been monitoring.i started to have bad pain in the liver area about 4 months ago and started vomiting a lot.i went to my doctors one morning really poorly and she decided to test if there were any anti nuclear antibody to be found in my blood of which they found two so I was then diagnosed with autoimmune hepatitis and sjogrens disease..I had a liver biopsy last week and I'm having an MRI scan on my liver this week so its all getting a bit scary for me..so I wondered if anybody else has experienced this?tia

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Hi Jaynep,

It sounds like you're in a lot of pain -- I hope the MRI gives your doctors information that will help. I'm guessing they've already ruled out any meds that you're taking as the cause for the abnormal liver results(?)

Here's a link for an article on "Behçet's disease complicated by multiple aseptic abscesses of the liver and spleen" (2013). It may have nothing to do with your own liver issues, but thought I'd send it just in case you want to show your doctors:

ncbi.nlm.nih.gov/pmc/articl...

You might also want to find out if there's any chance of Budd-Chiari syndrome. It happens in some people with Behcet's, and can cause abnormal liver test results.

Hang in there,

Joanne Z.

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Hi jzeis thank you so much for.thst I will have a read and show the doctor.. yes they've ruled out my medication because when taken of it it gets worse.

Thanks again very much ..

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Hi unfortunately yes, the old fashioned scan in the radiology departments is a total waste of time and not accurate. It has given the Dr's and me the bigges fright. Opt for the latest if possible. And take supplements help your liver, until you can get the proper test results done.

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I forgot to mention that I have multiple growths on my liver,only detected on MRI

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Aww not nice is it..I have MRI tommorow hoping alls ok with it x

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🙏🏼pray that it's all fine, pls let us know

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Thank you I am praying and I will let you know x

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Hi Jaynep, first I wish you very well, and I am wondering if you discuss your diet with your doctors - is it possible to detox your liver with beet water, drinking wheatgrass and Moringa Smoothies, they can help, my son drinks these smoothies, and detoxs with beetroot water (blend beet with filtered water, add little apple cidervinegar); I have discovered something about my son's blood work, his former rheumatologist did not follow up properly, I got copy of his reports, my son shows Anti Smooth Muslce antibody postive at 1:30 July 2017 - I noticed that his liver panel is rising since then, (higher end of normal range, ie. bilrubin is at 50 may 2019, cut off is 52), postivity of ASMA at 1:40 is sign of AIH, low yes, but cause to be concerned...his rheumatologist I phoned, and they seem not too concern, but I myself will seek alternative medical opinion with Hepatologist, from what I understand, he needs F-actin test to further rule out that he is not developing AIH, or he has mildly already....I do think there is yellowish of eye of white part, and skin bit on the yellow side jaundice like...but he seems to be ok now...but it has scared the living day light out of me that titer at 1:40...He has no anti-nuclear bodies, but ASMA alone will qalify it.... I think we are headed toward this direction as well....I want to find out now if my daughter can have a liver match, as he may need transplant in future ....as far as I read, there is only one treatment for AIH that is immunosuppresent and cortosteroid...my son is on azaithporine 150mg and 5 mg. predinsone...I hope that you will not need liver transplant, but I personally wish to be prepared for my son....as much as I can understnd...I am with you.....

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Ahh thank you for the reply and no I've not discussed diet with my doctor as yet..everything seems to be moving pretty fast now and I am a little scared..my liver levels been 3 times the normal level for a while now..they removed my gallbladder and when done biopsy on it it showed chronic inflammation.. I'm not having the pain or sickness atm but I dont eat much now as it seems if I eat anything it starts up again..I'm on.azathioprine 150 mg I titred myself of the steroids over a couple of years as they caused me a lot of weight gain which caused me further problems..hopefully I'll have some more answers soon..I do hope things get better for you're son too thank you again xx

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you very welcome, just to be safe side, perhaps you can advocate for liver donation now than wait later...not sure again, but that is what I intend to do for my son, we want to be ready for the horrible future...it is autoimmunity that attacks in behcets the smooth muscle mainly in liver, and other areas too, ie. brain..the horror story of dimentia does come in picture for autoimmunity...the only thing we can do is proper diet and exercise, and just keep going as much as posible, sitting and thinking about is worse....just find something to do that interests you...and do try the wheatgrass and moringa (fresh leaves, the asian oriental supermarkets carry it); wheatgrass, I can only buy at Walmart powdered grounded leaves.....do stay in touch...if you wish, my email is sghuttora@shaw.ca, I do intend to make his next rheuma...appn't and discuss this, as to why they are not doing further checking now...

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Ahh due to it attacking my brain I got diagnosed..I had a very bad few years with it ..I had to learn to walk again have speech therapy Ann.took high dose steroids..it still flares up occasionally and my speach gets slurred and balance goes but not often thank God.. I.never knew about it attacking the smooth muscle till now..I will keep I touch and wish you and you're son all the best xx

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my son too has neuro behcets, brainstem pons lesions, same speech, slurry, no more improvement, has new baseline, and yes, balance, and swallow also bit of issue still; we will pursue the Liver diagnosis on our own...he is anti-nuclear negative (he has no autoimmune dieseases, ie MS...but he had kawasaki disease as a child was in hospital for IVIG, that started this new Behcets in adult life...likely he had these antibodies from kawasaki, as I see his medical records...he liver at age 10 the GGT was high...and I his body formed these antibodies, and not all children later develop autoimmunity, but few do, my son did, he is HLAB51+, and now God has given him Behcets....I am deeply worried for him about his liver...I think this is what is going to our challenge in addition to Brain relapses.....I hope with GOd's Grace he remains stable on azaithporine...do take lots of omega 3 super rich now, and it is shown people with anti smooth lack fat saluable vitamins, a, d, e, k....consume kale, wheatgrass, greens....just blend them with fresh water, and leave it overnigh in fridge to capture all of the nutrition soluable in water...strain the pulp, squeeze the nutrition...and drink it....

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I had autoimmune hepatitis from the behcet’s in 2007, I went jaundice and lost 3.5 stone. It lasted a month. Couldn’t be in a lit room, there was very little they could do, was repeatedly vomiting bile. It was horrendous, but passed with the flare in a month, there was a lead up, then I think it burnt itself out. Thankfully it has never happened again. It took me a while to fully recover. It delayed me completing my MA.

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Ahh yes that's exactly what I've been like its lasted awhile and has knocked the wind out of me but I feel I'm improving fingers crossed 🤞I'm glad things got better for you and it gives me hope while having all these horrible procedures ..I hope you remain well x

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Hope you feel better soon, it was awful, really feel for you. It’s definitely one of the toughest rides Behcet’s has given me. It lasted about a month.

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Thank you yes I think its been one of the toughest on me too..take care x

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Hi Tom Tom; my son has brainstem/pons lesions, and eye artery occlusion - unfortunately after the eye occlusion doctors did not follow up properly with referrals, and behcets attacked his brain, and now I learn, as I posted here, my son (for sure you as you have AIH), is carrying the anti smooth antibody (ASMA+ at 1:40 back in July 2017 - I do not his liver profile, AST,ALT, Bilrubin although in a normal range, certainly the levels are getting in within Upper Normal Range - the only treatment for AIH is immunosupp that he is already on azaithporine - not sure what more can be done, but it worries me he may have AIH, as ASMA+ is sign of autoimmune hepatitis and liver diseases, with or without autoimmune setting...but will be seeking Liver Specialist gudiance, this Friday...his Billrubin May, last, was at 50 (cut off is 52) and levels AST, I note compared to last couple of years, are rising to upper normal side...this is very scary, sometime not sure, I do note his yellowis eyes of white part of eye, and face skin darkened yellowish tone hard to tell, as I think the Liver is certainly making its' way to AIH perhaps....I did research that F-actin antibody test is needed to confirm AIH once doctors know that someone is ASMA+ at titer of 1:40 at least in July 2017 - our rheumatologist was not experienced, and she negelected my son with her own confidence....any suggestions appreciated... truly wish you well...it is most difficult

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Hi Ashveer, I’m so sorry your son is having such a hard time. I’m afraid I can’t remember the medical details, however I was treated with prednisone at that time, this is 12 years ago. It was very difficult to keep it down. My eyes went yellow as did my skin, kings college hospital has an excellent liver unit. I hope your son gets better soon.

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Thanks for the reply, I do not many research articles that once on treatment, AIH has good prognosis - I do think something is coming for us, and it will not be easy, that liver has to give sometime, he been on azaithporine for about a year and half only...long way to go...there is not much else they can do other than azaithporine...I do think that his white part is bit yellowish slowly going this drection... most of Behcets patients looks like have ASMA + but I shall follow up with his Liver Specialist...take care...

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