Lupus and the Brain

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Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 451
   Posted 3/7/2016 5:39 PM (GMT -6)   
I have had lupus for over 20 years, while I've had a lot of central neverous system issues, migraines since a child I have never expirenced depression or unpleasant thoughts until recent. I had a real issue at the beginning of February to where I did not even want to be here and fight this battle any longer. I did discuss this with my Rheumy and he believes that my lupus has progressed to the point that it is attacking my brain. I have exhausted just about all treatments available to me for lupus. My Rheumy is hopeful that there is a new lupus drug in the pipeline for approval by summer. In the meantime I am still awaiting to hear if I've been approved for IVIG and how or if it will help the current attack I am experiencing.

I have been seeing a counselor, things have been for the most part good, but today I am feeling like I am headed in the wrong direction again. I'm wondering how common this is with lupus? Have any of you experienced this?

Melissa

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 3/7/2016 6:11 PM (GMT -6)   
When my Lupus was more active it did seem that depression was most definitely a part of the disease. As my other brain symptoms lessened, my depression seemed to lift somewhat. Or, have you had any other health changes recently that you might be having feelings about?

I'm sorry, I don't recall your treatment history -- I imagine you've tried Cellcept, Imuran, MTX, Benlysta... ???

Perhaps you are feeling sadness and loss due the inability to find a treatment that helps your particular Lupus manifestation?
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 451
   Posted 3/7/2016 8:44 PM (GMT -6)   
The biggest change for me was the aniphlaxic shock I had to October 6, 2015. I had had my Benlysta infusion a few days before and had a bad allergic reaction and the infusion had to be stopped. I had an appointment scheduled with my Rheumy the following Tuesday, we discussed the reaction and had decided my body was given out on the Benlysta, this was not my first reaction. While I was there I received my annual flu shot and bam went into full aniphlaxis reaction. My doc believes my body was still reacting from the Benlysta as I had been having a hard time breathing, just some really, really weird things. Anyway, fast forward to end of November, December and mentally I began feeling more off than my typical lupus neurologic issues, i.e. numbness, sharp pains in my face, behind my eyes, things of that nature. Now it has began affecting my thinking process and how I conceptualize things said to me, I forget periods of time. And all of this has snowballed depression, which is not helping any of it.

Yes, been through the gammet of Immuran, MTX, Benlysta, etc. I'm on I'm on Cellcept and Leflunomide both now with a slew of others to try and support them.

You are correct, I am very very sad because I feel I'm running out of options. My Rheumy told me so as a matter of fact. He list three medications that were an option for me and my situation when I had to stop the Benlysta. IVIG is the next on the next, leaving one more which is very very scary, it is used to treat leprosy of all things if this does not help. I am in fact freaking out. I am used to being the person people lean on, a very strong in control person and I can't handle being unable to control the unknown. I know that sounds crazy after having lupus for so long, but I was still able to manage and I had a handle on my routine and always felt I had a back up plan. Now at 48 I'm running out of back up plans, I guess that's what scares me the most.
Married the love of my life, mother of 2 beautiful adult children, 1 amazing daughter in law, and 1 grandson who is truly a gift from God! lupus SLE 1996, sjorgrens, raynauds. My worst nightmare was imagined when my son was diagnosed with RA and lupus NPSLE at 19. I try to live life as though everyday is a blessing, otherwise it would be hard to put one foot in front of the other...hugs

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 3/7/2016 9:54 PM (GMT -6)   
I think feeling somewhat depressed sounds very normal for your situation.

I had severe cognitive dysfunction for several years, I was tested by a neuropsychologist and the quickest way to describe it was "a 15 point IQ loss". I have been very, very lucky, as I responded well to 18 months on Cellcept. Now I'm probably 95% of where my brain used to function.

Yes, I totally understand being the one everyone leans on, the one in control. Having an unpredictable illness really puts the dampers on that, and every time I get to feeling a little in control again I get reminded that the unknown is bigger than me!

Do you have appointments scheduled to investigate the numbness & sharp pains behind the eyes? Neurologist? Seems like time to do some more investigation.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 451
   Posted 3/8/2016 9:01 AM (GMT -6)   
Lynnwood thank you for your response, it's reassuring to know there's someone out there that can relate in some form to what I'm going through while at the same time that too is upsetting because it's not something I would wish on anyone. I'm sorry that you've had to experience this madness.

I have been under the care of a neurologist for many years. As my symptoms have become more neurologic the test have become more detailed. I was diagnosed with Trigeminal Neuralgia and small nerve neuralgia in late 2014 early 2015, after they ruled out Occipital Neuralgia. I do received injections to try and control the pain quarterly.

I have not undergone any extensive cognitive testing but I can tell my thought process has diminished much greater than brushing it off as brain fog. For someone who worked in a high profile position, was a quick thinker to lose my words and to know the information is in there but I can't pull it out it is very troubling. I have been unable to work since Nov. 2008, so the fact that I am mentally just dealing with this has knocked me for a loop.

As I prepare to see my Rheumy in a few hours do you have any words of advice on things I should ask? Are there tests or specific help I should ask for? Goes to show being a veteran lupie means nothing, everyday is a new day.

Hugs
Melissa

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 3/8/2016 10:03 AM (GMT -6)   
You might want to ask for a referral to a neuropsych for testing. Or not, as I found there wasn't really anything they could do to ameliorate the situation. But I found much comfort in knowing that something really was going on, that it wasn't my imagination and I wasn't going crazy... and yes, it can be much much more than simple brain fog.

For a time I couldn't carry on a conversation, I would loose my train of thought in the middle of a sentence, never mind forgetting what the whole conversation was about. I couldn't even follow a 20-minute sitcom. I didn't drive for 2-3 years, I'd get disoriented at the end of my street where I've living for 30 years. I too was very high-profile, in fast-moving high tech industry, lost my business, my profession, and almost my self-respect.

Frankly, it sucked. Like I said, Cellcept was my miracle drug. Personally, I thought there was some inflammation in my brain and that the prednisone helped some as well, but no Dr or test supported that.

You might want to ask about an anti-depressant or an anti-anxiety med. I never found an anti-d that helped me that much, but everyone's "mileage may vary". Remember depression is a chemical imbalance, not a moral weakness!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 451
   Posted 3/8/2016 10:57 AM (GMT -6)   
Haha, yes it does suck! Frankly I am quite of the same opinion as you thus far, I have not found a anxiety medication that has helped. And while I have not been on a true depression medication (I take Effexor for fibromyalgia, which new doctors ask me if it's for depression) and Xanax for anxiety or to help shut my mind down and help me sleep I see no help in that area what so ever. I am currently on 10mg of prednisone, 5mg maintenance for adrenal insufficiency and then 5 more was bumped up to aid with inflammation. Cellcept worked wonders for many years, I began taking it in 2007. Perhaps my body has just become immune to it's properties or something, but it is a wonderful drug no doubt.

I have my list to discuss with my Rheumy and anxiety and depression are at the top.

Thanks so much for your input and support!
Have a great day!

Melissa
Married the love of my life, mother of 2 beautiful adult children, 1 amazing daughter in law, and 1 grandson who is truly a gift from God! lupus SLE 1996, sjorgrens, raynauds. My worst nightmare was imagined when my son was diagnosed with RA and lupus NPSLE at 19. I try to live life as though everyday is a blessing, otherwise it would be hard to put one foot in front of the other...hugs

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/8/2016 11:27 PM (GMT -6)   
I was talking with my mother today about how my brain has changed too.
I get depressed, restless, anxiety, and forget words.
I used to be with it and could remember entire books I read years before. I'm lucky to remember what I was going to do when I step into the next room.

Lupus loves to play with our brains. If we're lucky it remembers to return all of the parts back. Unfortunately, it's prone to dropping it on the ground and losing parts. LOL!
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Groundpilot
New Member


Date Joined Mar 2016
Total Posts : 1
   Posted 3/30/2016 5:37 AM (GMT -6)   
I was finally diagnosed w/SLE @age 36, For years I had constant pain all over, no Doctor ever diagnosed it, They thought perhaps fibromyalgia. I am sure you'll had to go thru the same hit and miss. I really had discovered it really hard to move and get out of bed, and felt like I had the flu all the time. My lovely ex said I was just being a lazy guy. Now @age 57 it's getting bad. My memory is scarring me.I've become lose for a words in mid sentence, lose my train of thought. Until reading your post Melissa, I hadn't known Lupus affects the brain too.Going to my GMED Doc. tomorrow @ the VA. The Tramadol I've been taking the last 2 yrs.aint cutting it anymore. My Rheumy switched me from Methylprednisolone to 5mg.prednisone,And put me on azathioprine 50mg 3 tabs daily. Here it is 6;38 am and haven't slept a wink. I have something going on with my legs some nites, tingly, throbbing. And frozen toes which I've had since my military days. Top that with coughing up some blood in my sputum a few times a day for the last 3 weeks but hey, Life can be good, Look at the blossoming trees and flowers.
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