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Posted 10/3/2008 1:16 AM (GMT 0)
Is brain fog due mainly to our meds or is it a part of Lupus.  A few of the doctors I have talked to have different opinions.  Some say it is from the meds and should go away after the use of them, some say that short term memory is a problem with meds and possible long-term and some say that there is no such thing.  I have an opinion about it, but I would like to know what some of you think.  Thanks! :)
Posted 10/3/2008 1:24 AM (GMT 0)
I think it's probably a bit of both; the meds and the disease.  But I would lean more towards the disease process as the bigger contributer.
Posted 10/3/2008 4:54 AM (GMT 0)
I'm really not on any regular meds to speak of, yet, other than OTC's and I definitely have brain fog. Is it Lupus.....Fibro.....chronic pain? I say yes.
Lucy
Posted 10/3/2008 5:18 AM (GMT 0)
I think so many things, even diet in sensitive people, can contribute. For people with severe liver impairment, ammonia from diet--meats and other foods--can cause a form of dementia like brain fog that can get severe. Not being able to metabolize medicines because of liver and kidney problems can cause similar problems. Reactions to anti seizure, psych, and other "neuropathy" drugs can cause similar problems. Thyroid, estrogen, and other endocrine problems can cause brain fog. Then the disease can attack a bunch of stuff, like nerves.

Since prednisone can throw off the endocrine, and other meds like methotrexate may be hard on the liver and kidneys, I can see that point. But many of us have some endocrine or repro damage as part of our disease, and neurological damage and neuropathy. diabetes can make you foggy too.

I think eating well and as directed by your doctor is a good thing. I've been able to minimize some pretty bad dementia type symptoms from a drug by watching what I eat, but then I have a bad liver, so this typical. Also, certain foods make the medicine I'm on cause more symptoms.

Oh, and if you take certain drugs and hormones together, sometimes the drugs block the hormones. I'm going through that now.

If what you have is bad, I would talk to your pharmacist and also your doctors about it. Alot of times when I'm bad, they test my markers and end up giving me a taper or something to help.
Posted 10/3/2008 12:09 PM (GMT 0)
I would say I have a slight case of the prednisone stupids, but nothing compared to the inability to think clearly before the meds.
Posted 10/3/2008 1:59 PM (GMT 0)
I think it can be some of both, but my own opinion is that it is more disease related than med related (at least for me). I developed pretty bad brain fog as one of my first symptoms before I ever even went to my doctor. My brain fog continued to be bad and actually starting prednisone helped clear some of my fog. I notice my fog gets worse when i am in a lot of pain, fatigued, or flaring.
Posted 10/3/2008 3:50 PM (GMT 0)

I was going to start a new topic on this very thing, beause I am scared of what is happening to me.  I do  not know what is causing it either, but pretty much I think that it is the disease and not the meds, because it was there before I started on this most recent medicine for Lupus.  and the only meds that i take specifically for Lupus is plaquenil.  maybe meds can make the brain fog worse, but I don"t think that it is causing it.

Do other meds for other problems cause the brain fog?  Maybe.  I honestly do not know.  I don't think I have ever told anyone but the people here at this forum, my fears about this brain fog.  I was afraid that it was alzheimer's, but realize now that it does not matter what it is called, the problem remains.  And the symptoms.  I think brain fog might not be a strong enough label for it.  I feel unable to attach my brain to myself.  i have written three checks to time warner for cable, and only one has been cashed.  why did I write three checks? I can't remember.  I can't think.

but it is like a fog between my incapacitated mind, and my capable mind.  for me it is terrifying.  afraid to talk to my doctor about it, and afraid not to do it. shakehead

One thing about it Firebabe is that you have probabably arrived at the best place possible to get the answers you seek.

Hester

Posted 10/25/2008 12:00 AM (GMT 0)
I have huge amounts of brain fog especially when i am having a flare around the time of my period it is the worst. I have problems with speech some days and I cant type any more with out going slow and watching my fingers. I have never thought about if it was meds or lupus. I remember when I was first really sick . Most days I could not think straight to save my life. I think it is lupus. I am going to look into getting some testing done.

Posted 10/25/2008 1:08 AM (GMT 0)
I am finally seeing some light at the end of the tunnel. I did over half of the classwork I was behind in the one class I will not be dropping. I have to make serious changes in my degree plan though because seriously I cannot do what I was planning unless I get another remission.
Posted 10/25/2008 2:56 PM (GMT 0)

It definitely can be both. I know I had brain fog with flares before I was ever diagnosed or took any medications. For me, prednisone completely gets rids of any brain fog and all other symptoms i've had. I've not taken pred for some time now, but i've been taking Plaquenil for 3 or 4 years and that does not cause me any brain fog. However, I also have spine problems, widespread muscle spasms & cramps, and widespread nerve pains and take a muscle relaxer, nerve pain med, and milder painkiller. These meds sure cause brain fog! I am also currently in school again (vocational/technical) and had to start taking these meds due to severe pain & symptoms. The meds do help alot but at first it made things worse to concentrate and study. But my PMs worked with me and we adjusted my doses so that my mind could concentrate more. Plus, after so many months on these meds, they don't affect me as much anymore. And thankfully, even on these meds, I was able to do very well in classes.

But i've had some brain fog in the past (when not on any meds at all) that was way worse than what all my current meds cause. I've had times where I was listening to someone, but could not comprehend what they were saying; i've constantly misplaced things or unknowingly put things in weird places (like putting a phone in the fridge, etc.); I've driven places and not realized where I was going or how I got somewhere, etc. I don't know...since being on Plaquenil, I haven't had such bad brain fog, so maybe Plaquenil helps that too?

Posted 10/25/2008 5:19 PM (GMT 0)
What was the question?
Oh yeah brain fog. I have had a scan done because of my fog but they didn't find anything. I'm not sure if they would or not but the nurse told me it was probably my meds. I do take xanax every day and I know it can cause the fog but I am not convinced that it isn't because of the disease also. Plus with the lung issues I would bet that part of my issues are do to to little oxygen somtimes.
hugs
carol
Posted 10/25/2008 8:53 PM (GMT 0)
I agree with hippi - I find brain fog & it's cousin (cognitive disorder) to be disease related. If I'm seeing other signs of a flare, chances are my brain drops out of the picture as well. I only found it to be med related on one occasion, and we quickly decided that was NOT a med I needed and found a substitute. Sorry, I don't recall what med that was.
Posted 10/26/2008 6:30 PM (GMT 0)

Hi! Everyone,

I think it is mostly from the disease of lupus. In fact, I took part in a study at Buffalo General Hospital in 2006 that was looking at that very concern, cognitive impairment in SLE. I am just now starting to look for the research data to become publicized. I went to the MRI scanner several times, and took part in memory tests. I had a sense I 'flunked' cause I was flaring at the time. They drew blood and took pages of hx. I have CNS targeted lupus, and difficulty with the ability to multitask like I used to was one of my first big worries. I had a sense I was losing my mind, and with the overwhelming exhaustion and falling that forced me to fight the dx. of menopause, and then, oh gee, are you sure you aren't just depressed........ when I read the term brain fog when I started researching lupus, I had an epiphany! That's it! And I love to read, so not having the mental clarity and focus to read a book was scary. The mental fog is managed best when I force myself to rest. When I let myself get too exhausted, then my thought process ability is worse.

sue 

Posted 10/27/2008 2:58 PM (GMT 0)
As you can all see, I'm new to your board, but I thought I'd share my experience.  My brain fog had been so bad for the past year I really thought I was losing it... I couldn't remember things my husband told me minutes earlier & I was constantly searching for words--I could see the object I wanted to name in my mind, but the name just wouldn't come out of my mouth.  I was anxious and frazzled all the time.  My family thought it was no big deal, but I know the way my mind works and it WAS a big deal!  Anyway, since my labwork came back with a positive ANA, I've really jumped in with both feet trying to fix things on my own... I've really cut back on processed foods & I've started Ginkgo Biloba 120mg time released caps.  I'm not sure if it's the diet or the Ginkgo, but I haven't felt this clear-headed in months! (I started the diet/Ginkgo on 10/15/08.)  Maybe Ginkgo would help someone else too.

Posted 10/27/2008 4:08 PM (GMT 0)

Thanks for sharing your experience with the Ginko!   I had another friend mention Ginko Biloba regarding memory.  For me - the brain fog seems to be a result of the illness - I never had these kinds of problems before.  I do believe chronic pain and the stress of trying to function in the face of all that comes with it creates a huge energy drain - espeically with sleep dysfunction.  Fibro folks all talk about "fibro fog".  I also think dietary changes away from foods that are over-processed and contain way more chemicals than we like to even think about, let alone can identify - well - helps everything!    

Please keep posting about your progress - I have been trying to manage my symptoms as naturally as possible also (high ANA-still in diagnosis limbo with the AI stuff) though I also recommend discussing it all with your rheumie/doctor.   

Lucy

Posted 10/28/2008 4:13 PM (GMT 0)
I'm definitely not clear on this issue. I was diagnosed with Cerebritis. It was serious! My thought process got so bad, my speech, my vision were affected. I know i've shared this before, but if you feel that it's getting beyond 'fog' I would highly recommend seeking treatment. Trust me, brain involvement is nothing to play around with! It can be deadly. Prednisone worked wonders for me, clearing it up. Judy
Posted 10/29/2008 1:31 PM (GMT 0)

I'm having trouble with brain fog as well.  I, too, cannot recall words I'd like to use.  I will have the concept or definition in mind and cannot come up with the word.  It's very frustrating as I have always prided myself on my verbal abilities.  (Pride comes before a fall. :)) 

I also have difficulty writing and typing sometimes.  I will misspell words that are simple and be shocked when I proof my own work. (Again, I'm a former spelling bee winner-the one everyone else asks how to spell words.)   My hand will sometimes not make the marks I'm intending to write.  It's like my hand will not cooperate with my brain.   It's a good thing for humbling me, but it's still distressing.

I

Posted 10/29/2008 3:13 PM (GMT 0)
My favorite is when I'm typing along with a perfectly good sentence, then when I go back to proofread it my fingers have typed entirely different words than I meant -- and its not even words that are spelled similarly or mean or sound the same!!! Like 'then' turns out to be 'ought'....so figure!!
Posted 10/29/2008 7:45 PM (GMT 0)
Wow, I am so glad so many of you relate to what I have been going through.  Lynnwood. you have it exactly. I write something down and I am thinking one thing and write a whole other word. I transpose letters all the time now I never did before and my speech. same thing i am thinking a word and something totally diferrent will come out or the first letter will be some other. My 11 year old son loves to tease me about it but I know it is not funny at all. thanks.

Posted 10/29/2008 9:29 PM (GMT 0)
OMG, I do the same thing while writing or typing!
Posted 10/31/2008 4:58 PM (GMT 0)

Brain fog and sleep problems are related to the diseases first and the meds second, doctors usually shrug off these two problems attributing them only to the meds, but these were the first clear signs that something was seriously wrong for me well before i took any medications. I did the best when the prendisone was at 12,5 and the worst now at 5,0. I know that the pain makes me more tired, I know that the fear of what all this non thought clarity is doing to me, my work, my life my future and therefore that of my daughter and this adds stress and depression to the whole situation but I am sure that it is fundamentally caused by the disease itself. I recognize a lot of the symptoms which many of you have described here: difficulty with finding words, attention span problems (i no longer can read anything longer than an article, I use to read a few novels a week while working a 50 hour work week and being a very available mom) All of these changes started before I was on the meds.And they are clearly worse during flares. There is always a lapse between when i start to feel badly and I can get to the doctor and he ups my dosage so to me this confirms, disease first meds second

Posted 11/1/2008 4:00 PM (GMT 0)

Hey Dels,

Welcome to the forum, if I have not already said this.

I feel the same way about the brain fog, and meds vs. Lupus and other autoimmune disease.  I think the meds can worsen the symptoms, but I believe that Lupus, or other diseases causes the symptoms.

Sometimes I drive to pick up my grandchildren, and find myself in places and wondering how I got there.  or the familiar route to pick them up, looks unfamiliar.  and sometimes I try to say or write a word, and the words that come out of my mouth are not the words I meant to say or write.  I used to be very good at grammar, spelling and meanings of words, but this ability seems to have went on vacation without me.

Yesterday is a good example.  I have worked on cars all my life and now I find it difficult to diagnose a problem much less fix it.  My car needed antifreeze in it.  I am no longer able to crawl under a car to fix it.  and I cannot for the life of me figure out how to tell my grandson how to do it.   I took the radiator cap off the radiator, and forgot to put it back on.  I drove a few miles with the radiator cap off, and the water all boiled out of it.   I replaced it with antifreeze, but I hope I didn't ruin it by letting it run too hot for too long. 

The stress of this one little thing, a thing that used to be so minor, caused me to stress out over it, scared that I would not be able to get it fixed in time for my grandson to use my car to get to his third shift job.  Stressing out flawed my thinking.

I believe the disease causes this, not the meds, or not just the meds.  The one saving factor for me is that it is not alzheimer's, and it is not uncommon among people who have autoimmune diseases.  and autoimmune people do not get locked away in nursing homes.

thank you very much for your response

Hester

Posted 11/3/2008 7:01 PM (GMT 0)
I am terrified yall.  My grandson arrived here at my door and knocking.  He was arriving unexpected, and for some reason, my words left me.  I am totally today, using words to express what I want to say.  I mean definitely not used the words that I have.  I do typing better than using verbal words to people.

I wonder if I have had a stroke or something.  Things are way off base for me.  I was fine when my grandson arrived unexpectedly, and things simply changed totally after that.  Called my granddaughter to come today to find me talk.  I might have went to a brain fog that I can find not use.  I may have to stop driving.  I am not safe to drive.  but for some reason to type better, but not totally as I need to be.  but it seems to be better after I (vote for?) talked to my granddaughter.  I am still unable to use my words and ability to speak as well completely, but better than type as verbal words.

I may need to have an emergency to visit see my rheumy.  I may need to an emergency for a neurologist visit or tests or whatever.

Simply something is totallly wrong.  and it was so sudden.  and Josh my grandson went through the hall to the computer where he used it to do things he needed.  and at I was fine until I tried to talk my grandson to speak him as he said things about the web sites he was having up.  and I could no use the words I needed.

I am so glad that you are there for me.  i am very scared.  I will do better when I see my granddaughter, and talk to her.

I have not eaten, so maybe I can use a banana sandwich for me.  Will see if that helps.

Will see what things go for me.

Hester

Posted 11/3/2008 8:51 PM (GMT 0)

Hester,

 

Have someone take you to the hospital Imediatly!

Dels

Posted 11/4/2008 11:14 AM (GMT 0)

thank you for Dels.  I may have hurt myself, maybe, but today I will see the doctor.  two of them hopefully.  I found that I can use simple sentences.  I think I will be better by finding my all of you.  Writing to all of you I think is making it better.  speech therapy I am think that I may have.  maybe some home health people for me to help me awhile.

I made myself voice of words.  It is simple to speak about simple things.  and it will come back to me.  By the time I had my right arm doing things, the doctor found six weeks later when he told me that he had the stroke in 2002.

will let you know when I know later today.

Don't forget Ginny.

Hester

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