Since my wife was diagnosed with Multi Infarct Dementia 3 years ago nothing was done to figure out why she had the strokes in the first place. We had to wait until she quailfied for Medicare (she is 54). We have now discovered that she has SLE or Lupus and she has an antibody which is causing blood clots. Has any had any experience with dementia that was a result of Lupus? I am hoping this will be good news for the future since we may be able to prevent more brain damage if we can keep the Lupus in control. Thanks , Don

I just want to give you a quick update on Suzanne. Since she was diagnosised with Lupus not too much has changed. She is still on the Aricept which was for the mult infarct dementia.She has a lot more medications to take now and everything seems to be agreeing with her. One thing that I have noticed is that she doesn't always verbalize when or where she is having her pain.She can't remember day to day what was hurting. I can see when her knuckles are swollen and can't open jars or if she is having trouble walking or climbing stairs. We are still working on an acceptable pain medication. (She is not suppose to take Motrin which worked the best before). While I am glad she is realatively comfortable - I know I will have to watch for non verbal clues when she is in pain. Thanks for your support. Don

Hi Don...
It's great to learn you are caring for yourself during your journey. May the counseling work for you and I hope you are able to make connections with real people facing similar situations. Please don't forget we are here for you. Am also sending hope that you find relevant answers with the rhuematologist.

Wow, Sandmason...
What a wonderful story of personal success over a frightening auto-immune disease that many don't understand, let alone know how to proactively treat. Congratulations!

Wishing both of you the best life has to offer, today and everyday.

Don,
I agree, lupus is a scary disease. Try not to overreact, I think FEAR just fans its flames. Fight lupus with inner peace.

I had SLE from 1976 until 1983. It went away and never came back except for an occasional skin lesion if I get too much sun in the lower latitudes, like Florida or Mexico. High altitude Colorado doesn't bother me at all, even if I stay out all day and get really sunburned fishing at 9000 feet.

It altered my immune system and I never got sick in 20 years, and my allergies seemed to vanish.

Have hope, the literature is gloomier than the reality.

People who stop having lupus are not in the literature, because they can't afford to ever tell their new doctor they ever had it, or their health insurer or life insurer will find out. After ten years they destroy records so I NEVER HAD IT, unless I reintroduce it in a new doctor's history.

I would suggest getting rid of any constant irritants though, like pierced earrings, breast implants, IUDs, rubber insoles and gloves, lingering mild tooth or gum infections, toenail fungi, deep acne cysts that flare up periodically. Just intuitions.

Mine started after a summer of sunshine when we moved to Mobile, Alabama, I had the new copper IUD for birth control, tried the new surgical steel pierced earrings that made my neck break out in an itchy rash, then bought some mohair sweaters on sale and got a perm in my hair. Then I tried the red veterinary petroleum sunscreen which sent me to the shower with fire all over my body. That was the last straw. But I had also had a severe gram negative bacteremia 9 months before the lupus and had had my first child. So, go figure. The immune system gets confused sometimes.

My point is, it comes and goes. You don't hear much about when it goes. Mine went after 7 years. I was young. I was fortunate to have four more children after the doctors forbade it entirely.
Me and my lupus, I realized I wanted to live. Then it went away.
Sandi

Thank you all for your reponses. I am starting to feel like I am learning more than I want to know. We are going to Suzanne's Rhuematlogist tommorow and hope he will begin some form of treatment. Two weeks ago we had a wasted appt since all of the tests results were not there yet. I think she may have a more serious form of Lupus and I am having a harder time accepting this than her strokes and Dementia. I have started seeing a counselor also since I am having a hard time dealing with this alone. Thanks for all of your support. Don R

Hello again, Don... Had better luck this time when searching for a connection between the onset of dementia symptoms and Lupus.

You may already be aware of this site but, if not, please click on Systemic Lupus Erythematosus. Of particular interest is the following quote: "Cognitive changes with SLE are quite variable. Presentation may be acute or subacute with clinical manifestations of agitation, altered awareness, dementia, or overt psychosis. Although dementia is not considered one of the most common presentations, formal neuropsychological testing has suggested that 66% of SLE patients experience congnitive impairment."

You've taught many a lot by drawing us to that information, Don. It also allows us to see a bit of what you and your wife have been facing for what must seem like an eternity by now. Please visit with us and perhaps we can lighten the load during your difficult journey.

We are here for you... Joan Marie

Hi Don, not much luck trying to find a specific connection between Lupus and dementia. However, given the causing agent is excess blood clotting, I'm thinking your wife's symptoms may be related to vascular dementia. Wondering what drugs have been suggested to control the impact of Lupus as well as the impact of impaired cognition.

Wishing you and your wife success and look forward to your return... Joan Marie

I recall my husband having a problem with blood work and one of the irregularities was seen in Lupus.This was done 14 years ago.When he was re tested it was not present

x

I don't think so.

WELCOME, Don! I don't have an answer to your questions, but with this bunch of wonderful folks, someone will know something of assistance to you! Glad you found us and hope you will stop in often!