Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
Hi,
A close family friend who also has SLE, with a very severe case, recently had an MRI. This shows she now has lesions on her brain. I was wondering if anyone else had this and if so what are the treatments and your result. I have SLE, but its more of a moderate case and it doesn't effect my brain. I have noticed her personality has changed. Is this normal?
A close family friend who also has SLE, with a very severe case, recently had an MRI. This shows she now has lesions on her brain. I was wondering if anyone else had this and if so what are the treatments and your result. I have SLE, but its more of a moderate case and it doesn't effect my brain. I have noticed her personality has changed. Is this normal?
I'm so glad you wrote about this. I had daily headaches, migraines about 4 times a week. I also was extremely depressed- (I actually think I couldn't feel ANY emotions and my personality changed. I was given antidepressants and when they didn't work- anti-psychotics.. still didn't help... the psychs were considering electroshock... All the while my physical health was getting worse. The doctors decided to give me plaquenil. After about 6 weeks those headaches/migraines were gone and I was mentally healthy again..
I don't know if there are lesions on my brain but I am damn sure my brain was being attacked by lupus. Like I said, plaquenil has helped and really quite a lot.
I'm not sure if this is "normal". I have tried researching it and there isn't an abundance of information out there on neuro-psychological effects of lupus. Everything I read is pretty technical but there is plenty of evidence that lupus can attack your brain- just like it can go for your kidneys or liver. It is treated the same way- by suppressing the immune system.
That being said- people with chronic health problems commonly get depression and have "lupus fog". I would encourage anyone who thinks its more than this to get a second opinion..
lastly- It is an intense fear of mine that I will get sicker and it will go for my brain again. I have nightmares of being locked in a mental ward- drugged to the eyeballs unable to speak for myself and tell them to shove the meds they are giving me and fix the autoimmune stuff...
HTH a bit - Sorry I don't have more answers for you.
Coralie
It is creepy, I don't like to think about this either...and I certainly would not want to be stuck in a mental institution on those drugs they use. That would be horrible.
The brain is not easy to study, being encased in that thick shielding of bone like it is. I don't think, based on what I've read, that they actually know very much about what lupus does to the brain. It all sounds like conjecture to me. I'm not especially impressed with the state of medical knowledge of all the chronic illnesses. People who do research go for cancer and heart disease, that's where the big money and fame is.
I have brain involvement with my sle. I was diagnosed about 15 years ago with sle and I saw recently in some old reports that the physican at the time noted there was neurological involvement . I only became aware myself that something wasn't right about 7 years ago when I was having constant severe headaches and memory issues. I was then referred to a neurologist who hospitalized me to get the pain under control and do a MRI and lumbar puncture. MRI showed the lupus activity, lots if tiny white marks/ imflamation/ lesions. Treatment was started, at that time Topamax. This was in addition to the lupus meds of plaqiuine. I was really well controlled for several years. Headaches 99% gone, memory better but not great.
Out if the blue the headaches returned and I returned to the neurologist for reassessment. Another MRI done which showed no new inflammation. These scans can differentiate between old and new inflammation / lesions. Meds changed to Neurontin and Trepeline with great success. I still have memory issues but neurologist has stressed how important it is to keep ones brain working. I do this with lots of different activities. Forming new pathways in the brain is the best protection against memory loss. I have found this to be true.
My entire adult life I have battled with depression which is also correlated with the condition but it's not known which comes first :). This has been the most painful part of the disease to bear. I have been on several different medications as well as therapy. Currently I am getting really good results on Valdoxane and Mindfulness therapy. I have not felt this well emotionally for years.
My sle itself is really well controlled currently and for the first time ever I am just about to be off prednisone. My rheumi has suggested this as my symptoms and blood work have been so good for a long time now.
So all in all a long story with ups and downs, currently good! Your friend is welcome to write to me.