20 years in a catatonic state cause SLE

[BeeManShrop]

Hi All Just thought you may be interested in the following link. Woman was 20 years in a catatonic state until they found she had lupus attacking her brain. Similar to my wife who was discharged (in 2020) from hospital after 6 weeks with no diagnosis of the root cause, other than she could not eat and had 3 different infections, and the advice for us to complete a DNR and a Respect form to state she was not to be readmitted to hospital. Basically we were allowed to break covid rules and visit her once when she was delirious -- 3 days later she was discharged. Basically, the consultant (15 years experience) was sure she would last a couple of weeks and sooner if she caught another infection. Two weeks after discharge the consultant phoned us to say a blood test had been returned showing her dsDNA was over 1000 which soon brought a diagnosis of SLE. Thankfully, she is now much better and dsDNA has slowly reduced to near normal -- thanks to hydroxychloroquine. I wonder how many other cases exist of undiagnosed Lupus?

dailymail.co.uk/health/arti...

[Chris21]

what an awful time you both had! Thank goodness they found out the cause and your wife is now on the mend. 🙂

[Betty909090]

”Thankfully, she is now much better and dsDNA has slowly reduced to near normal -- thanks to hydroxychloroquine. …”

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Sorry and very sad to hear about your wife’s missed lupus diagnosis and disturbing lupus brain involvement.

You’ve mentioned hydroxychloroquine (HCQ) only but am wondering whether she was prescribed other popular medications for SLE by a lupus specialist eg

Mycophenolate mofetil (MMF)?

Systemic steroids eg Prednisolone?

Biologics? eg Rituximab?

I haven’t read the article yet but one wonders whether the term, “brain fog” (extreme form) coupled with psychiatric symptoms was ever mentioned? The term brain fog is often mentioned here with lupus.

Thanks for posting and hopefully your wife is recovering well from the worst symptoms of SLE.

Her medication list would be most useful to all in this forum.

Thanks.

Best regards.

[BeeManShrop in reply to Betty909090]

Hi Betty Thanks for your reply. Re medications -- she was going downhill for several months before being admitted to hospital. Not an easy decision when covid was at its worst and knowing that there would be no visiting, and as it happened, also no feedback whatsoever from the hospital and when I tried to get through to the ward they did not answer the phone. When I rang the operator she just said that she could not get through either.

My wife has had RA for many years and was treated with methotrexate. The rheumy assumed that the methotrexate had suddenly stopped working on her RA so she was put on baricitinib (a biologic) for about 6 weeks -- we now think that this was too strong and effectively wiped out her immune system, allowing the infections to take hold. When she gradually got more ill and was eating less and less until eventually she was not eating anything -- hospital was the only option to get the strong antibiotics and anti- fungals etc. As it appeared that it was an eating problem she was admitted to a gastro ward where none of the many consultants (they worked on a 5 day rota system so no-one took ownership) could determine what the root cause was and no-one thought it could be lupus. The result was she was sent home for her last days. She then spent 4 months eating/drinking Complan, and nothing else, before she eventually started taking some real food. I think this fills in the gaps. I really posted to raise awareness that anyone could be miss diagnosed for 20 years to eventually find that it was really lupus. This makes our few months of hell seem short. There is always someone in a worse state and it makes us feel lucky that it was eventually sorted out.

[MaameAba]

Hi, I know how that feeling when you don’t know what is happening. Our daughter was admitted to hospital about 400 miles away from home with something similar. She had a psychotic episode and didn’t even recognise who we were. Luckily one of the specialists had seen something like that before and so did the right test and the results came back positive. To cut a long story short, she was put on chemotherapy and hydroxychloroquine, and 10 years later she is a doctor, married with a daughter and doing well. Thank you for sharing your story.

[Spotty-ewe in reply to MaameAba]

What n amazing story you have to tell too MA. So pleased to hear it has a very happy ending. Xx

[Spotty-ewe]

What a dreadful ordeal you’ve all been through. So pleased the right diagnosis and treatment has at last been found. Like Betty said, it would be very helpful to us here to know what other medication she is on. Thanks for sharing your story Bee Man.

[chrisj]

I saw that report, couldn't quite believe it. Glad your wife has improved with hydroxy. That was the drug prescribed for me and it helped enormously.

My gps were very slow to get a blood test done, it was a locum who sent me off and within 2 weeks I had a diagnosis of SLE after months of wondering what was wrong with me. Keep well xxx