Brain Fog

June 25, 1999

Yes, I have felt the same way with dosage change and sometimes just brain fog

hits for no apparent reason... It is tough

Dixie

Dstirratt@... wrote:

> From: Dstirratt@...

>

> I've been on 5mg of Pred for 6 months and when I went down to 2.5 to try to

> get completely off, my enzymes tripled. So doctor put me back up to 30 and

> will taper back down after it shocks my system back to normal. Problem is

> I'm extremely dizzy, headaches, and am having trouble thinking clearly (brain

> fog is the only way I know to explain it). I called and the nurse doesn't

> seem too worried. Anyone else felt this way after a big change in dose?

>

> ---------------------------

June 25, 1999

I lived in a constant state of brain fog for a couple of years! Turned out

that I have sleep apnea. Now I still get the fog when I change doses, but

I'm not always walking around with the fog lights on!

Don

July 1, 1999

Sounds like a very rapid pred reduction. When I reduced too rapidly my

main problems were from pain and fatigue though my labs stayed mostly the

same. I don't recall " brain fog " but maybe my brain is too foggy to

notice? My husband says that he's noticed that I seem to have an

increasing problem remembering words though this only happens when I'm

talking, not when I write. I remind me of my Mom after she'd had a stroke.

She used to get so frustrated she'd stop trying to find the right word and

just say, " oh, you know what I'm trying to say. "

I don't have a problem with headaches except that I notice that I often get

them just after I eat dinner.

Recently I saw a Rheumatologist and he told me that he recommends that I

not continue to try to reduce my pred at the rate of 1 mg. per week

(approximately). Instead, he suggested that I stay at 5 mgs. for 3-4

months or even longer then reduce by 1 or even 1/2 mg. for another several

months. If my labs stay okay I guess I'll try it. I've been under 10 mgs.

for months and so far no real weight loss. In fact, all I really notice is

that I'm a lot more tired and having considerably more leg and back pain.

From my experience, the average nurse, even a nurse who works for a

Hepatologist, isn't qualified to tell you whether or not you are having

negative effects from your medication. In fact, they shouldn't even

presume to try. I believe that they are overstepping some legal boundaries

when they do this, according to information I've read on medical law. Not

that many RNs aren't exceptionally knowledgeable because sometimes they

seem to have a better overall picture than the doctors do. Something many

of us forget is that even a Hepatologist is still not necessarily well

versed in the effects of the medication they prescribe. AIH is different

from other liver diseases since I don't think that other liver diseases are

treated with corticosteroids. Because AIH is a relatively rare disease, we

might all ask our doctors if they've treated anyone else with AIH. The

answers might surprise us. I've found that either a Rheumatologist or an

Endocrinologist would be better versed in the effects of corticosteroid

treatment. I know that my Hepatologists haven't exactly been vigilant

about monitoring possible side effects and they act like I'm commenting on

the weather when I mention some of the problems I'm having.

Take care,

Geri

July 13, 1999

Kaye and others

Thank you so much for talking about brain fog. I thought I was just dumb or

stupid or starting alzheimers. Also have trouble reading because lose

concentration easily.

>From: Kaye Gillis <kgillis@...>

>Reply- onelist

> " onelist " < onelist>

>Subject: [ ] Various topics

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>From: Kaye Gillis <kgillis@...>

>

>I have been out for the last five days due to illness so, rather than

>answer all the e-mails I received, here are my responses to the issues

>you all have been discussing. (I'm sure you have all been holding your

>breath waiting for me to come back and put in my two cents!!)

>

>As for the convention - I love the idea... money may be a problem but,

>if I start now, perhaps I can have enough stashed away by the time we

>have the big party!

>

> Regarding our immune system and not getting ill as often: When I first

>started on prednisone, my hepatologist recommended I take my temperature

>everyday for the reason that prednisone disguises many illnesses and you

>can get very sick before you have any symptoms. I quit taking my

>temperature after a few months because I can pretty well tell when I

>feel different than usual.

>

>I consulted a nutritionist about 2 years ago because I was using

>' Deal a Meal (you eat very healthy food and well balanced meals

>and snacks - start out at (I forget exactly) about 1,000 calories the

>first week and then stay at 1,200 until you have lost your desired

>weight. I got extremely fatigued (more than usual) and the nutritionist

>said it is very important for people with autoimmune diseases to never

>consume less than 1,400 calories per day; that that is what our bodies

>need to hang in there with this disease. He also recommended very few

>animal fats and sugars - they are hard on the liver....just a sensible

>diet.

>

>Re: BRAIN FOG - read this ---- I have worked at the same office for 7

>years. It is about 1-1/2 miles from my home to my office and I got lost

>on the way to work this morning!!! I had to whip around and make a

>u-turn to prevent heading onto the freeway!!

>

>Maybe we should also do a journal of all the dumb things we've done due

>to brain fog!

>I could fill a book!

>

>And, speaking of filling a book, I don't mean to do that here - just

>wanted to connect since I've been out.

>

>I love belonging to this group!! I feel sane again!!!

>

>Kaye - AIH - Ohio

>

>---------------------------

July 14, 1999

Hi Jody,

I think that some doctors make statements that are both uncaring, and

unprofessional. Before i was diagnosed with AIH and experiencing

fatigue, brain fog, and memory loss, i was told by the doctor i was

seeing at the time, that i was getting old and must accept that these

things will happen. Her advice was to eat soy and linseed bread. I

went to see another doctor armed with a tube of urine, it was only

then that things started to move. I felt such relief when i realized

that my symptoms weren't in my head, but were symptoms of a very sick

liver. My new doctor is very caring and professional. Interestingly my

first doctor returned to Malaysia, i was never told why.

I still suffer memory loss, and often feel that my brain has gone to

sleep even though my LFT's are in the normal range.

Have a good day

AIH

July 30, 1999

Jody

Carrying your own records when you visit the doctor, what a good idea.

The problem is getting them from the various doctors, some devils keep

forgetting to hand them over.

On brain fog. I have noticed that when i am about to get a headache my

brain just doesn't function, and i experience extreme fatigue. I just

loose the whole day. Perhaps its my body telling me to rest? Or it

could be due to a boost of hormone levels? As someone suggested.

I wish my body could speak English and tell me what was happening, we

would't need to go to the doctors as often then, and that would be a

bonus.

Have a good day

AIH

_____________________________________________________________

July 30, 1999

Leona, we have to laugh at these things. They are funny and at the same time so

annoying. The other day I had intended in throwing some paper in the garbage

and opened

the back door and threw it out! I could go on forever about this stuff, I have

learned

to laugh at it, but hope nothing happens that is important and hurts someone.

Lynn in

Wa.

Leona Singleton wrote:

> From: Leona Singleton <lona@...>

>

> talk about stupid,

> i just went to have my dinner and i got out a glass not realising it and put

my

> lasange in it. it wasnt untill after i had realised it and my family broke up

> laughing... i guess it is funny to them but very frustrating to me... its been

one of

> thiose days i think

>

> ---------------------------

August 3, 1999

, All ya have to do to get your records is to send the doctor(s)

a note thats states your name, what you want, DOB, SS# and sign and

date it. This is a legal records request. When all this liver stuff

started I sent everyone, hospitals included this type of letter and

within 3 or so weeks they all arrived. There will a copying cost for

most offices. the Hospitals will for sure charge you but its well worth

it for the amount of hassles one has to go thru getting all the

specialists the info when your there seeing them.

Being the anal woman that I am, I also made a lab flow sheet. It was

something I did when I worked for the GI/Liver doctor. If you want I

can try to make one with my computer and email it to you or anyone

else..I like this cuz when the doctor I see tomorrow asked for me to

fax all my lab reports I just had to send the sheets. Made it a LOT

easier. It took me a couple days to organize the labs by date then fill

in the sheet..

Jody

--- brenda maguire <bmag21@...> wrote:

> From: =?iso-8859-1?q?brenda=20maguire?=

> <bmag21@...>

>

> Jody

>

> Carrying your own records when you visit the doctor,

> what a good idea.

> The problem is getting them from the various

> doctors, some devils keep

> forgetting to hand them over.

>

> On brain fog. I have noticed that when i am about to

> get a headache my

> brain just doesn't function, and i experience

> extreme fatigue. I just

> loose the whole day. Perhaps its my body telling me

> to rest? Or it

> could be due to a boost of hormone levels? As

> someone suggested.

> I wish my body could speak English and tell me what

> was happening, we

> would't need to go to the doctors as often then, and

> that would be a

> bonus.

>

> Have a good day

> AIH

>

> _____________________________________________________________

>

December 16, 2000

Thanks. Brain Fog is a big problem for me, although my very nice gp just looks puzzled when I mention the symptoms.

My new difficulty in spelling effortlessly does little harm, but it does remind me daily that my mind is different now. Oddly, I believe I think better in some ways. Maybe that's just because I'm not being tugged in twenty directions by the demands of a job.

I fowarded the article to my daughter, who's had a very severe case of CFIDS for 12 years. She introduced me to the term, Brain Fog, years ago; I thought she'd invented it. My LiverDoc says there is no connection between CFIDS and AIH, but everything I read leads me to believe that there is. Not that knowing does any good!

Harper (AIH 5-00, female, 57, California)

December 16, 2000

Don,

I too find this one of the hardest things of AIH to deal with!! I will go to

give out a phone number at work that we give clients all the time, and

suddenly can't remember it! People think I'm just dizzy! It's very

frustrating. I though for a long time I was going to end up with Alzheimers

disease. It was really scaring me; then I found out that it was related to my

failing liver. I was very relieved. Don't fret too much over it. I've found

that when my train of thought leaves without me...there's usually another one

coming around the bend any minute!!

AIH in MD

December 16, 2000

From the research I've done, Brain Fog is very common in autoimmune diseases. Nearly everyone with an autoimmune disease experiences it to varying degrees. For me, it's one of the most aggravating parts of my illness. As a top salesman, I was always able to think very quickly. Now, I'll lose my thought in mid sentece. Argh!!

Don

Terradon Unlimited

http://www.TerradonUnlimited.com

"People who ask me how we can still have such a positive attitude after all we’ve been through, have it all wrong…We’ve been able to get through all that we have BECAUSE we have a positive attitude". Don Hanson 8/2000

May 14, 2002

Hi ,

I get very foggy during a flare! I don't work outside the home and

I really doubt that I could! I forget things that I've said or done.

It was kind of scarey at first, but now that I know that it's just a

symptom of PA, it doesn't bother me so much. Tell your son to hang in

there. Good luck!

Dian46226

May 14, 2002

When I took the comprehensive exam for my master's degree, the smartest

person in our class failed. She failed the second time. She petitioned for

an oral exam and passed with flying colors. The bar exam is the same. It

is more about your test taking ability than what you know. In a way, that

is fine. Lawyers have to perform under pressure. In the other way, it is

very unfair because your husband obviously passed every course. Since we

probably can't change the requirements, he has to figure out how to pass the

test. Private coaching by a law teacher or writing instructor could do the

trick. It is probably not the medication if he managed to get those kinds

of grades unless he just started taking the medication.

I put my husband through law school and know the kind of pressure you are

talking about. I'm sorry he has had to deal with health problems at the

same time. I hope he has a good job (law clerk) in the meantime where he is

able to use his education w/o the bar certification.

Ks Di

[ ] Brain Fog

I'm curious to know more about this brain fog some of you talk about.

The reason why I ask about this is because my dh recently graduated from law

school and has failed the bar exam twice. He was a A/B law student and this

is throwing him for a loop that he can't pass this exam. He realizes that

many people do not pass it but now I wonder if it has anything to do with PA

or Enbrel? We know of no one who suffers from arthritis like he does and

until I stumbled on to this list - I wouldn't know where to turn.

Has PA affected your job or schooling?

in NJ

May 15, 2002

Sorry Di but I think that I disagree with your opinion. The one opportunity

exam a year that you are given to pass a law school course is probably more

in line with your masters exam. Your husband who passed on the first round

doesn't have PA does he?

If memory serves the bar exam lasts about 6 hours a day for two days. A

normal person gets brain fog. The PA husband should ask for different time

constraints if he thinks that it would help...and it probably would with PA.

If he is working and trying to study for the bar ...then he should ask for a

month off or more and really put all his energies just on passing the

bar....he is probably exhausted particularly since most law firms work

clerks to death. Since he has to pass the bar to be a lawyer and he has

worked so hard this far (I know how hard law school is with PA...I had a

terrible time and was miserable and in so much pain and exhaustion...lost my

foot and wrist and knee and some fingers during it), he and you should make

whatever sacrifice it takes to get through the bar...even if he has to quit

his job to focus on it. I passed the first time but I focused totally on

passing the bar for two months....and even then it was a struggle; I was so

tired.

May 15, 2002

Ks Di, I didn't know you could take the test orally. This would help him

because after two days of extensive writing, his hands are so swollen and sore

that he can't hold a pencil at all! I know in lawschool you could take exams by

typing them but since my husband isn't great on the keyboard - that wasn't going

to work either. He is being tutored now by this guy who studies with you one on

one. It's quite expensive but will be worth it.

My husband only came upon Enbrel after law school unfortunately. He wishes he

did it sooner but he kept denying that he would have to go to this type of

medication. His 4 years of lawschool (he went part time at night) were murder.

The stress of school upon his full time job as a state trooper and then being a

husband and father (we had our second child during his 2nd year of law school)

made his PA turn into a continuous flare.

I still don't know how he did it/does it. Anyway, that is why I asked about

brain fog - just wondering if Enbrel could be the culprit.

in NJ

RE: [ ] Brain Fog