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Posted 7/12/2009 2:10 PM (GMT 0)
My wife has just received a Systemic Lupus diagnosis that is primarily neuropsychiatiric in focus. her arthritis symptoms are currently incapacitating as is the fatigue.
This HE interestingly looks almost identical to CNS-systemic Lupus. The symptoms are very close and the treatments are nearly identical. The only dubious treatment for Lupus---IVIG--has been tremendously effective for her HE.
Obviously I am not thrilled by another "name" being added but i guess it doesn't matter anymore.

What I am wonder though is: When a person with lupus has lots of CNS/neuropsychiatric features with lupus, is it always a form of secondary CNS vasculitis or can it be a nonvasculitic feature of Lupus.

It sounds like a stupid technical question, but I think it makes a big difference both in treatments and also in her long term prognosis.
Strokes for instance are vasculitic in nature.

Does anyone know the answer to that question?

Thanks
Posted 7/12/2009 3:42 PM (GMT 0)
Welcome to the Forum. I'm afraid I don't have any useful information for you, but I hope someone comes along soon who does. We have a lot of active regular members, so there is a good chance someone knows something!

Hang in there,
Posted 7/12/2009 4:53 PM (GMT 0)
Countryboy,

I'd also like to extend a welcome to you. I'm afraid that I can't answer your questions either as I don't have any CNS involvement, but like Lynnwood, others here will hopefully be able to give you some opinions. Have you posed these questions with her doctor? If you don't go to her appointments with her, I'd highly recommend it. And go in armed with a written list of questions. A good rheumy will take the time to answer all your questions and concerns. What meds is she on?

She's fortunate to have a caring and concerned husband willing to do his own research.

This forum is not only a place to look for opinions and information, but also support and understanding. One of the most coveted benefits of this particular forum is the ability to come here and vent, scream, whine, and cry in a way that we can't in the real world. And at the same time we help each other with our own experiences and research.

Your wife might benefit from joining us too. Lupus can be a tough road to travel and having the support of others, who become close internet friends, can be almost as helpful as the meds we take. And we are proof that there is life after lupus.

I hope we see you again.

Pat
Posted 7/12/2009 5:20 PM (GMT 0)
I had brain involvement with lupus, my doc called it cerebri***/vasculitis. I had a spinal tap, ct scan with contrast and an eeg to diagnose the problem. I was paranoid, had mood swings, severe depression, visual disturbances, severe headaches, light sensitivity, short term memory loss, difficulty speaking/articulating thoughts (to a severe degree).

I know that i'm not directly answering your question. My neuropsychiatric features were definitely due to inflammation caused by lupus. It responded immediately to high doses of steroids. It was very aggressive and when we would back off of the steroids it would rear it's ugly head. I battled it for months before we got it under control.

Some meds can cause the NP features, oddly enough, steroids themselves can. The stress of the disease can cause NP features. I think that's why my doc insisted on the diagnostics to make sure of what we were dealing with. This features can be very dangerous as i'm sure you're aware. I hope you find the answers you need. God Bless you and your wife! Judy

By the way...please forgive my ignorance...What is HE?

Post Edited (MJLD) : 7/12/2009 3:59:46 PM (GMT-6)

Posted 7/13/2009 3:12 AM (GMT 0)
Hi my name is nona i have had brain invovemnt with lupus sorry to say in can affect your brain in so many ways I have a seizure disorder now from the lupus and i have had periods of hallucinations and hearing voices but....seizure meds work great and lots and lots of steroids finally helped get the inflamation under control those along with a drug called cytoxan have kept the neurological effects of lupus at bay i know this is very frightining to deal with but your rhumey will hopefully get this under control sometimes it does take time to see witch drug works for a person i am sure you will hear from others that they have tried many treatments until they found what worked best for them.
Your wife is so lucky to have you to advocate for her dont give up! if one thing does not work try something else sometimes this disaese takes you on a long journey but try to be as informed as you can I have found this website to be very helpful and comforting I really hope your wife finds some relief soon you will both be in my prayers
Posted 7/13/2009 1:13 PM (GMT 0)
So sorry about the acronym. I wasn't thinking. HE stands for Hashimoto's Encephalopathy or as Mayo calls it SREAT (steroid responsive encephalopathy with autoimmune thyroiditis). It is an autoimmune disease that both symptomatically and in terms of treatment nearly identical to CNS-SLE. However HE is viewed as non-vasculitic. Thus for years she has had periods of hallucination, disorientation, permanent short term memory loss, tremor, myclonus, numbness and tingling in the hands arms and feet, increasing eye problem such as pupils not the same size, loss of perepheral vision and tracking problems, unbelieveable headaches and extreme fatigue. During bad periods she will sleep up to 22 hours per day and have to have her food cut because she is weak.

The Lupus was found as a result of having to be taken off of the subcutaneous methotrexate. After a month off of it, her joints began to hurt worse and worse until she could barely walk.

Another difference is that the marker for HE is an elevated TPO-ab which is usually not seen in Lupus as I understand it.

HE is an extremely rare condition with only several hundred cases reported world wide. It is however believed that it is probably much more common as people suffer from dementia and psychosis or appear to have had stokes if they are untreated. Thus it is believed that probably many people are in psych hospitals or nursing homes misdiagnosed.

I hope this helps
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