Posted 7/13/2019 6:44 AM (GMT -6)
Lupus is a mysterious illness, and it's basically the immune system deciding some perfectly normal part of the body is actually foreign, and then attacking it like it's a parasite or bacteria it needs to kill. It very seldom attacks the brain, but it can.
In fact, I am one of the people who had brain issues!! My lupus caused brain inflammation -- enough inflammation to increase the blood markers that indicate inflammation, but not enough to actually show anything in my head with the MRI. However an intense, all-day series of neuro-psycholgical tests showed a series decrease in many of my cognitive functions. The summary of the 24 page report, in terms for the layman, was "17 point loss in IQ".
I had serious difficulties following a conversation. If I tried to say something, I would often loose my train of thought before I finished the sentence. I couldn't follow a 20-minute TV sitcom, couldn't read a book, obviously couldn't finish the PhD I was working on at the time, had to close my business and lay off my employees, etc, etc.
I was lucky in several ways -- the automatic functions of the brain didn't seem to be affected. While I had some issues with coordination, I never had problems breathing, moving muscles, etc, many of the things the brain does. I do recall having some fatigue issues with my eyes and ears, where my eyesight or hearing would "fade out" for hours at a time -- but nothing terribly serious.
My second stroke of luck was my recovery! 10 or so years from the worst point, I am probably functioning at 90-95% of normal -- I haven't had any follow-up neuropsych testing to measure improvement (no $$ due to disability), but I can see and feel the evidence in my everyday life. Of course, I can also feel the impacts whenever I get over-stressed, eat too poorly, loose sleep, or overdo things -- hits me harder and takes longer to recover than a normal person.
What aided my recovery? There are a series of medications used to treat Lupus -- 1) plaquenil, prednisone, 2) imuran, cellcept, mtx, then heavier duty things like 3) IVIG & benlysta. Plaquenil inhibits disease progression, prednisone helps combat the inflammation. Most patients are on both of these for the duration.
The second set of meds act thru inhibiting the immune system, preventing its over-reaction to common things. Generally Drs try one of these at a time, as it's unclear which might help a specific patient or why. For me, we started with Imuran, no improvements, no side effects. Moved on to Cellcept -- which turned out to be my miracle drug!! I think it took about 18 months before things started getting significantly better.
The third set of meds usually reserved for extremely serious and systemic lupus involvement. When this forum was more active, I could tell you more about this, but I'm afraid I've forgotten much of it. Check out the Lupus 101 thread and let us know if you have more questions.
I also credit these things to my recovery:
-- always was a healthy weight, eating healthy, for years before Lupus, which I continued as I could. (For a while there were only a few things I could tolerate, none of which were healthy. lol)
-- always physically active, marathon runner. Never totally stopped, even at my sickest I would try to walk 2-3 miles or go to the gym. Thankful for supportive friends who went with me!
-- learned fairly quickly to honor my limits. If tired, rest, not push thru. If eyes hurt, close them. If ears hurt, go to a quiet place. Work with the illness, not against it. I compare it to surfing... can't fight where the waves take you.
Do most people get better like this? Some do, some don't. This is a mysterious illness, and there is really no predicting it. It also works differently in everyone -- this is how my brain reacted, it could be totally different for your co-workers daughter. Brain involvement could mean brain lesions or tumors or who-knows-what.
I am a little surprised that they diagnosed Lupus in the absence of other symptoms. In my case, I had other symptoms and was diagnosed years before my cognitive involvement. Perhaps there is more to the story than you know.
Hope this helps!