SLE & Jaundice Advice

[FS93]

Hi all,

Just wanted some advice or point in the right direction from people..

My husband has SLE since 2020 and has been having flare-ups nearly every year for atleast 6 months consecutively.

To manage his Lupus he was given Azathioprine (normally on Pred & HCX) to which he had a side effect and ended up in hospital with Jaundice for atleast a month this year.

His admission in hospital was at the end of April, and since then he has had no improvements for his symptoms (yellow skin/eyes, excessive itching, extreme fatigue) He had had a liver biopsy and skin biopsy to which they have not had any results back yet.

As you can imagine, this is extremely difficult for him physically and mentally as he is restricted to what he can do, he is currently unable to work due to his health, and limited mobility means that he is becoming increasingly frustrated as he has to be dependent on myself (he is usually very independent and prefers to do his own things)

Doctors are not able to provide any new information, help or offer treatment. Does anyone know what I can possibly do as next steps? I am going to be raising a formal complaint about the level of care he received at the hospital and the miscommunication and lack of communication upon discharging him and post-discharge.

Thanks in advance.

[Flows]

Hi im sorry to hear that your husband has been so unwell. I too have lupus and autoimmune hepatitis. I was initailly placed on the same medication azathioprine and had the same symptoms because i had an allergic reation. I was then placed on mycopenolate and recovered. Have they even considered the meds may be causing this. Sorry i cant be of more help

[KnitSewPurl]

ncbi.nlm.nih.gov/books/NBK5....

Something for you to read about azathioprine.

[Suvi8901 in reply to KnitSewPurl]

Thanks for posting this reference 👏👆to liver toxicity caused by AZATHIOPRINE:

“…Hepatotoxicity

Azathioprine has been associated with several forms of hepatotoxicity, including mild, transient and asymptomatic rises in serum aminotransferase levels, an acute cholestatic injury developing during the first year of starting therapy, and a chronic hepatic injury marked by peliosis hepatis,…” etc

Shouldn’t he come off this drug and be prescribed an alternative safer one eg MMF for his SLE?🧐

[KnitSewPurl in reply to Suvi8901]

Yes, he should come off it and be treated for his liver first then change to alternative drug but it is for the doctors to realise as well..which they are not 🤷.

[Oldbits]

Hello, sorry to hear your hubbies so unwell. I came across your post because you mentioned jaundice. (My hubbie has liver problems) Has he had a LFT blood test to see how his liver is coping now?(gp can arrange this) It would show if his liver is inflamed etc. Itching , fatigue and jaundice are all signs that a liver is struggling. The liver is such an amazing organ and if you can remove what is upsetting it it can start to repair. Has he seen a hepatologist? As he's had a biopsy sounds as if they have started to investigate. (it was nearly 2 months before my hubbie got an appointment to discuss his result). If you have a good gp get them to chase the result or to find out who requested the biopsy and chase them. I contacted hospital and made a nuisance of myself. That's what I had to do to get the ball rolling here. I hope you get some answers soon.

Just noticed someone else mentioned medication. My husband had AIH and was put on mycophenolate as it was the best one for a poorly liver. But everyone is different.

[juneybells]

Hi sorry to hear about your husban. I too have SLE for many years then became jaundice after several test including a biopsy I was diagnosed with Autoimmune Hepatitis. Please chase the biopsy results so that treatment can start as already advised the liver can recover. I know its hard but make a neusance of yourself. I hope you can get the results quickly and he can start treatment soon. Sending best wishes xx