Hepatic liver

[Jaq1971]

so I have been to London again to see the scleroderma clinic to find that still a year after my gall bladder was removed my liver is still showing no signs of healing and I now have inflamed joints everywhere I was booked for a san in August at Royal free but a week later my rhemotologist at Musgrove called me in she looked at me and wanted to start the methotrexate, only two days later she called and said I must not take them as my liver is showing signs of being hepatic and this could be very dangerous and cause liver failure. I have spent 4 days in bed as I can barley walk and now have bleeding from the bowel next steps are biological treatments and liver biopsy has anyone else had the biological treatments ? Any info would be great

[Tiggywoos]

Jac I am so so sorry you are going through this … surely surely Gastro must help you ? I remember you and i chatted before as I am under musgrove rheumy . I know Gastro messed you about a lot before but surely if they can’t help they should refer you down to RD and E ?

I haven’t been on biologics but wanted to reach out to you as you must feel so awful . Please post this on lupus forum as I think you’ll get good response

Take care xxx

[Jaq1971 in reply to Tiggywoos]

Thanks tiggywoos they have referred me to a heptologist saying h my systemic sclerosis is attacking my liver ? I’m under Dr Wheatley so hoping he will do something as you know I have no faith in gastroenterology at Musgrove as for two years they kept telling me it was functional pain then I complained through pals and suddenly I am diagnosed with systemic sclerosis scleroderma no skin involvement gastritis and oesophagus dismobility all in a year I have PTSD from all the gas lighting so this has had another massive blow to me xxxx why don’t they listen to us x

[Tiggywoos]

husband is on fligotinib for his colitis as other drugs damaged his liver . So far it’s been good. He’s under care of Daniel Pearl

[OldTed60]

Hi firstly I’m sorry you are having these problems. I can relate because my gallbladder surgery in 2015 left me with very high liver blood readings for over a year. I must also say that methotrexate is terribly harsh on liver - I had to quit it after 2 years for this and other GI related reasons prior to gallbladder surgery. I was initially diagnosed with RA in 2011, now changed to systemic sclerosis with associated Sjogren’s. I still have a lot of MSK pain but told this is non erosive and mostly affects tendons and muscles although have quite severe degenerative disc disease and hypermobility. I’m seeing my rheumy in a few weeks to decide if a trial of Rituximab is warranted.

The bowel bleeds you describe are only thing I don’t have and warrant urgent investigation. I would prioritise this over getting onto biologics just in case it’s IBD - which might warrant a different biologic treatment or Azathioprine.

Wishing you best of luck with liver biopsy and bowel investigations. I’m in Scotland and had similar gaslighting trauma from gastro gaslighting and discharging me many times prior to finally acknowledging my gastroparesis and bowel dysmotility after tests confirmed both as severe. Then SIBO, which was dismissed initially by VC during pandemic because I kept quiet about IBS-type symptoms due to previously being fobbed off. Royal Free gastro team are meant to be good if you can maybe see them instead?

[BonnieG123]

I’m at a loss as to why your rheumy would tell you to take MTX when there were questions about your liver. I stopped taking MTX after two+ years because I was concerned about what it can do to your liver. Hoping they find something to help you liver heal itself quickly. I see many things proclaiming to do just that but no intel about any of them. Best wishes on your journey to healing.

[Jaq1971 in reply to BonnieG123]

Well to be fair they prescribed it and within a week my liver results came back from Royal Free and my local rheumatologist spotted this rang and stopped it unfortunately my gastro have ignored my high liver readings for over a year so when questioned by both London and my local rheumatologist they are now acting with liver biopsy I am under 9 stone drink nothing but water have coeliac disease which I have managed well for 15years and don’t eat processed foods so they cannot blame lifestyle although they have tried previously to say that. In latest letter from gastro it says hectic liver and all I can think is my Gail bladder was left for 2 years, before I paid privately to have it out only to be told from an MRI scan prior to surgery that it was full of sludge and thickened no stones which is consistent with systemic sclerosis I’m sure this didn’t help my liver. when removed it was stuck to my liver so again not good the biological treatment apparently is better as won’t filter through liver I’m awaiting chest X-ray and bloods before I can start treatment

[BonnieG123 in reply to Jaq1971]

I think a lot of doctors don’t get the implications because it’s not their specialty, unfortunate for us. My gastro did not explain completely to me the implications my gallbladder removal would have on my system except to say avoid fatty foods. I was in a mess with not being able to eat out as I was constantly going to the bathroom. I couldn’t go out with friends and got stuck at home. I found a real help accidentally. And at least I can eat out again. I wish you all the best.

[strongmouse]

My husband was on methotrexate for RA and then picked hepatitis E which meant his liver readings went through the roof. They stopped the methotrexate and the infection gradually went. The liver readings remained outside of normal levels, but low enough to allow him to start biologic medicine. He has been told that loosing weight will help to bring the liver down. His biopsy found a fatty liver. He also started drinking half a mug a day of coffee and the two things do seem to be helping slowly.

[OldTed60]

Another similarity we have - my gallbladder had also stuck to my liver so added to the year or more of soaring liver bloods. It didn’t cross my mind that this might relate to my systemic sclerosis as was misdiagnosed with RA at the time. But it does make sense of the scarring/ fibrotic changes.

[Jaq1971 in reply to OldTed60]

I will keep you posted old Ted when with liver biopsy but yes they have said that was the cause of thickening of Gaul bladder and sludge no stones

[OldTed60 in reply to Jaq1971]

I had one giant stone and no thickening or sludge was mentioned. But my gallbladder had become attached to my liver somehow so detaching it via keyhole caused a big bleed. The stone was too big for keyhole but the surgeon tugged it out as no time to do full abdominal surgery. I then got a post op wound sepsis. I only found this out when listening to them discussing my case on ward a few weeks later.

No one was looking for systemic sclerosis with me at this stage and they blamed the sepsis on low dose steroids which I was on for RA at the time. This was a few months after Azathiorine gave me acute pancreatitis which the surgeon misdiagnosed as Cholecystitis, then changed to UTI sepsis. Finally a visiting nephrologist took my Amylase, which was high, so she quickly worked it out. She told me that she thought whatever was actually wrong with me was much rarer than RA. 2015 was a bad year for me! X

[OldTed60 in reply to Jaq1971]

PS yes I’ll look out for your updates - please take care and best of luck 😊

[Jaq1971 in reply to OldTed60]

Hi old ted as promised I have an update I have been diagnoesed with

1. Systemic sclerosis/UCTD (inflammatory arthritis, telangiectasia, sicca symptoms,

oesophageal dysmotility, Raynaud's phenomenon, gi involvement and over active bladder anti-centromere pos, anti-Ro 52 and positive U3 RNP)

2. Moderate hepatic fibrosis - ELF score 8.8. Under gastroenterology so they are starting me on biological

majority of disease modifying treatments that are used to treat inflammatory arthritis are metabolised through the liver the only one that is safe is rituximab. which sounds terrifying .happy for me to remain on

hydroxychloroquine. It usually does not require blood test monitoring, but in this case they

recommend I continue to have her LFTs checked on a 3 monthly basis.

They have contacted my gastroenterology team about and further investigations and they have been done to try to exclude autoimmune Hepatitis its very likely that this is the case I’m booked in with hepatology on the 2nd September

Because of my poor liver this poses some challenges so now I wait again xx

[OldTed60 in reply to Jaq1971]

Thanks Jaq1971 - we have a bit in common it seems. I understand why you have scleroderma/ UCTD now because of having more than one antibody. Apparently scleroderma antibodies are supposed to come alone, not bring others along for the ride. However we do share a rare scleroderma antibody, U3 RNP, which sets us apart a little in terms of outlook I believe. I’m seeing my rheumatologist on Monday and we will be discussing a trial of Rituximab - which both the scleroderma Prof and my Rheumy favour as, unlike Mycophenolate, it bypasses the gut. I’m a bit scared of it too though so I put it off last year. Anyway must dash as got my iloprost day today and things will hopefully start early on the ward. I do hope you get the test results with clarification on autoimmune hepatitis and can work with the hepatologist on a good treatment outcome - maybe Rituximab for us both? X

[Redwine53]

My daughter has ulcerated colitis and been on a biological for quite a few months at uclh London. It started with three fortnightly infusions, then an 8 week break, now it’s fortnightly injections at home. She seems to be permanently exhausted though she was anyway before she started treatment., but the bleeding has stopped.

My friend’s husband is also on some biological for his lungs, and he has apparently improved enormously.

[Tiggywoos in reply to Redwine53]

Just wanted to say redwine my husband is on fligotinib for his colitis and it’s helped tremendously . He had to stop infusions as he did developed antibodies and aza gave him liver damage . Fligotinib was total game changer . Only came about after he was admitted with pneumonia . I’m sure your daughter is in amazing hands at the UCL . So so hard for her being so exhausted bless her xx

[Redwine53 in reply to Tiggywoos]

Thanks Tiggywoos and I will pass on your message.

So glad your husband has found something that works for him.

My daughter so wants to get on with her life, she’s only 30, well, actually she does her best, but it’s good to know there are probably other options for her.

[Tiggywoos in reply to Redwine53]

I do sympathise with you as husband was 43 and had never experienced any bowel or fatigue issues . I was shocked when he took the “spoon theory” on board as I never thought he would but it does help . It’s so frustrating having to rest and reorganise life around illness for your daughter I bet xxx