Oh no, am I going to go crazy??

[Guest guest]

Actually, this post will probably sound a little crazy.

I was recently diagnosed with Lupus, and when I told a friend, she said

that she has a relative with Lupus, and it " attacked her brain, and she

went crazy. Totally insane. "

Anyway, now I'm scared to death that this disease will literally make

me crazy and I'll have my children taken away from me. Does anyone know

anything about this? Is it inevitable if you have Lupus? Is there

anything you can do to prevent it?

[Guest guest]

Hi, !

No, you're not going to go crazy. Well, maybe you will when your

kids are teenagers, but it won't be from the lupus, and you will

recover from that when they are old enough to move out! Trust me,

been there. In rare instances lupus can involve internal abdominal

organs. I've had it for a very long time now, I'm a nurse and I've

researched it quite a lot. And no, you will not inevitably go

crazy. I suspect that possibly your friend's relative may have had

an underlying condition other than the lupus which might have given

her mental problem. If it surfaced at the same time as she was

diagnosed with lupus, it could be mistakenly blamed on the lupus.

It's possible the stress she experienced from receiving the lupus

diagnosis brought out some psychotic behavior or other, but the

tendancy toward psychosis would have been there already. Just

brought out by her stress.

BTW, I recovered from teenage induced insanity...they finally grew

up! Now I'm da Grammy! It's a lot more fun!

Hugs,

LCB

--- In , " beanmommy2 " <beanmommy2@...>

wrote:

>

> Actually, this post will probably sound a little crazy.

>

> I was recently diagnosed with Lupus, and when I told a friend, she

said

> that she has a relative with Lupus, and it " attacked her brain,

and she

> went crazy. Totally insane. "

>

> Anyway, now I'm scared to death that this disease will literally

make

> me crazy and I'll have my children taken away from me. Does anyone

know

> anything about this? Is it inevitable if you have Lupus? Is there

> anything you can do to prevent it?

>

>

>

[Guest guest]

I'm not a nurse, but I have to disagree with it not effecting your brain. This

is from a reliable source. And frankly, although it scares the crap out of

me...I'd rather know ahead of time, what could happen and prepare my family,

than be surprised. They do point out that only a certain percentage of Lupus

patients have these things happen...and it's good to be optimistic...but I truly

believe that as all things in life...being prepared & informed takes away fear

of the unknown.

According to the Lupus Foundation of America, " Lupus is an autoimmune disease

that can affect almost any part of the body, most often the joints, skin,

kidneys, heart, lungs, blood, or brain. " (www.lupus.org) and it goes on to

say....

" How Lupus Affects the Body Lupus causes inflammation and other damage in one

or more organs or organ systems. For some people this damage may be limited to

skin and joints. In other people, the lungs, kidneys, blood, brain, or other

organs and tissues also may be affected.

Systemic lupus can be mild or severe and sometimes fatal. Some of the more

serious complications which involve major organ systems are:

inflammation of the kidneys (lupus nephritis), which can affect the body’s

ability to filter waste from the blood. This can be so damaging that dialysis or

kidney transplant may be needed.

an increase in blood pressure in the lungs (pulmonary hypertension)

inflammation of the heart muscle (myocarditis), which can lead to congestive

heart failure

hardening of the arteries (atherosclerotic heart disease), which is a buildup

of deposits on coronary artery walls that can lead to a heart attack

involvement of the nervous central system and brain (CNS lupus), which can

cause stroke, memory problems, confusion, and headaches.

inflammation of the brain’s blood vessels, which can cause high fevers,

seizures, behavioral changes, and psychosis. "

www.lds.org www.lupus.org www.akc.org/breeds/dachshund/index.cfm

“A new commandment I give unto you, That ye love one another; as I have loved

you, that ye also love one another. "

---------------------------------

Access over 1 million songs - Music Unlimited.

[Guest guest]

I'm not a nurse, but I have to disagree with it not effecting your brain. This

is from a reliable source. And frankly, although it scares the crap out of

me...I'd rather know ahead of time, what could happen and prepare my family,

than be surprised. They do point out that only a certain percentage of Lupus

patients have these things happen...and it's good to be optimistic...but I truly

believe that as all things in life...being prepared & informed takes away fear

of the unknown.

According to the Lupus Foundation of America, " Lupus is an autoimmune disease

that can affect almost any part of the body, most often the joints, skin,

kidneys, heart, lungs, blood, or brain. " (www.lupus.org) and it goes on to

say....

" How Lupus Affects the Body Lupus causes inflammation and other damage in one

or more organs or organ systems. For some people this damage may be limited to

skin and joints. In other people, the lungs, kidneys, blood, brain, or other

organs and tissues also may be affected.

Systemic lupus can be mild or severe and sometimes fatal. Some of the more

serious complications which involve major organ systems are:

inflammation of the kidneys (lupus nephritis), which can affect the body’s

ability to filter waste from the blood. This can be so damaging that dialysis or

kidney transplant may be needed.

an increase in blood pressure in the lungs (pulmonary hypertension)

inflammation of the heart muscle (myocarditis), which can lead to congestive

heart failure

hardening of the arteries (atherosclerotic heart disease), which is a buildup

of deposits on coronary artery walls that can lead to a heart attack

involvement of the nervous central system and brain (CNS lupus), which can

cause stroke, memory problems, confusion, and headaches.

inflammation of the brain’s blood vessels, which can cause high fevers,

seizures, behavioral changes, and psychosis. "

www.lds.org www.lupus.org www.akc.org/breeds/dachshund/index.cfm

“A new commandment I give unto you, That ye love one another; as I have loved

you, that ye also love one another. "

---------------------------------

Be a PS3 game guru.

Get your game face on with the latest PS3 news and previews at Games.

[Guest guest]

You really need to discuss this with your doctor, and you need to be on

medication to control the Lupus. I have it, and my sister has had it for 20

years. The chances of it causing any damage to the brain, especially when you

are on meds, is extremely rare. You have a better chance of being hit by a

bus. Sometimes people have Lupus for years and never even know it, sometimes it

is found right away, usually through lab tests.

Take care, try not to worry about what the Lupus " could " do., and stay out of

the sun.

Patsy

El Mirage, AZ

DX 2005 Stage 1 PBC

AIH/SLE/RA/COPD

Just a woman of letters....

[Guest guest]

I didn't say it was impossible, I said it was " not inevitable " . In

over 25 years of medical practice, having seen literally several

thousands of patients, I've seen many people with lupus. And not

once have I seen one go crazy. It is possible, but not at all

likely. It's sort of like reading the doctor's insert for meds;

just because all the bad side effects are written down doesn't mean

you will experience them. The odds are quite against it.

Being prepared & informed can take away the fear of the unknown, but

inadequate amounts of information (such as the odds on how likely

you are to go crazy) can create much more panic than is warranted

for the situation. Anything's possible. But is it likely?

>

> I'm not a nurse, but I have to disagree with it not effecting your

brain. This is from a reliable source. And frankly, although it

scares the crap out of me...I'd rather know ahead of time, what

could happen and prepare my family, than be surprised. They do

point out that only a certain percentage of Lupus patients have

these things happen...and it's good to be optimistic...but I truly

believe that as all things in life...being prepared & informed takes

away fear of the unknown.

> According to the Lupus Foundation of America, " Lupus is an

autoimmune disease that can affect almost any part of the body, most

often the joints, skin, kidneys, heart, lungs, blood, or brain. "

(www.lupus.org) and it goes on to say....

> " How Lupus Affects the Body Lupus causes inflammation and other

damage in one or more organs or organ systems. For some people this

damage may be limited to skin and joints. In other people, the

lungs, kidneys, blood, brain, or other organs and tissues also may

be affected.

> Systemic lupus can be mild or severe and sometimes fatal. Some

of the more serious complications which involve major organ systems

are:

> inflammation of the kidneys (lupus nephritis), which can affect

the body's ability to filter waste from the blood. This can be so

damaging that dialysis or kidney transplant may be needed.

> an increase in blood pressure in the lungs (pulmonary

hypertension)

> inflammation of the heart muscle (myocarditis), which can lead

to congestive heart failure

> hardening of the arteries (atherosclerotic heart disease),

which is a buildup of deposits on coronary artery walls that can

lead to a heart attack

> involvement of the nervous central system and brain (CNS

lupus), which can cause stroke, memory problems, confusion, and

headaches.

> inflammation of the brain's blood vessels, which can cause high

fevers, seizures, behavioral changes, and psychosis. "

>

>

>

> www.lds.org www.lupus.org

www.akc.org/breeds/dachshund/index.cfm " A new

commandment I give unto you, That ye love one another; as I have

loved you, that ye also love one another. "

>

>

>

>

>

>

>

>

>

>

>

>

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

> Be a PS3 game guru.

> Get your game face on with the latest PS3 news and previews at

Games.

>

>

[Guest guest]

LCB,

This is an important point and one that seems to often get lost in our

discussions here. We have to try to keep in mind what the likelihood of

events in question is (if known).

Also, many stories told to us by friends and relatives often have

sensational rather than medical value.

In this particular instance, it might also help if we defined what is meant

by " go crazy. "

There is no doubt that lupus can affect the central nervous system (CNS) and

does so in the majority of SLE patients. The CNS may be affected in number

of ways - some are not very serious, some are extremely serious. It's also

important to keep in mind that some CNS symptoms can be caused by the drugs

used to treat lupus. Antiphospholipid antibodies are another important cause

of CNS events. Infection is yet another.

Probably the term used to describe a type of lupus CNS involvement that

would be closest to what an ordinary person may mean by " crazy " would be

" psychosis. " According to Wallace in his " The Lupus Book " (3rd edition,

2005):

" Sometimes lupus patients may demonstrate symptoms of psychosis. Psychosis

is defined as an inability to judge reality, marked by disordered thinking

and bizarre ideas, often including delusions and hallucinations. It usually

results in an inability to carry out the ordinary demands of living. The

incidence of acute (and fortunately, temporary) psychosis is between 10 and

15 percent during the course of systemic lupus.

Most psychotic episodes occur with CNS vasculitis, but others occur as a

result of steroid therapy, water intoxication with low blood levels of

sodium, seizures, inadequate antidiuretic hormone secretion, central

hyperventilation, or antimalarial therapy. Psychosis may, however, be

evident without CNS vasculitis. "

Wallace then goes on to describe treatment for lupus psychosis.

So, generally speaking, lupus psychosis, if it occurs at all, is temporary

and treatable.

Not an MD

[ ] Re: Oh no, am I going to go crazy??

>I didn't say it was impossible, I said it was " not inevitable " . In

> over 25 years of medical practice, having seen literally several

> thousands of patients, I've seen many people with lupus. And not

> once have I seen one go crazy. It is possible, but not at all

> likely. It's sort of like reading the doctor's insert for meds;

> just because all the bad side effects are written down doesn't mean

> you will experience them. The odds are quite against it.

>

> Being prepared & informed can take away the fear of the unknown, but

> inadequate amounts of information (such as the odds on how likely

> you are to go crazy) can create much more panic than is warranted

> for the situation. Anything's possible. But is it likely?

[Guest guest]

Thank you ! That was a good explaination & easy to understand.

~Sue in TN

---------------------------------

Need Mail bonding?

Go to the Q & A for great tips from Answers users.

[Guest guest]

Very true , this being the point that in the context it was

originally spoken of " attacked her brain, and she

went crazy. Totally insane. " is very unlikely to happen. Even the

incidence of ten to fifteen percent for temporary psychosis isn't

that high.

And yes, sometimes people tend to over sensationalize things. It

could be that the 'drama queens' don't know about the current

treatments. It might be good to remember that treatment for lupus

has come a long way in the last thirty years or so. It used to be,

more or less, looked upon as a death sentence since before treatment

people's life spans were seriously shortened. Now with the

medications and better understanding of the disease we can have a

nearly normal lifespan, and medical breakthroughs are happening all

the time. There are new drugs in testing right now that when

approved, will make even more significant progress against this

disease.

All in all, da future don't look dat bad!!

LCB

>

> LCB,

>

> This is an important point and one that seems to often get lost in

our

> discussions here. We have to try to keep in mind what the

likelihood of

> events in question is (if known).

>

> Also, many stories told to us by friends and relatives often have

> sensational rather than medical value.

>

> In this particular instance, it might also help if we defined what

is meant

> by " go crazy. "

>

> There is no doubt that lupus can affect the central nervous system

(CNS) and

> does so in the majority of SLE patients. The CNS may be affected

in number

> of ways - some are not very serious, some are extremely serious.

It's also

> important to keep in mind that some CNS symptoms can be caused by

the drugs

> used to treat lupus. Antiphospholipid antibodies are another

important cause

> of CNS events. Infection is yet another.

>

> Probably the term used to describe a type of lupus CNS involvement

that

> would be closest to what an ordinary person may mean by " crazy "

would be

> " psychosis. " According to Wallace in his " The Lupus Book " (3rd

edition,

> 2005):

>

> " Sometimes lupus patients may demonstrate symptoms of psychosis.

Psychosis

> is defined as an inability to judge reality, marked by disordered

thinking

> and bizarre ideas, often including delusions and hallucinations.

It usually

> results in an inability to carry out the ordinary demands of

living. The

> incidence of acute (and fortunately, temporary) psychosis is

between 10 and

> 15 percent during the course of systemic lupus.

>

> Most psychotic episodes occur with CNS vasculitis, but others

occur as a

> result of steroid therapy, water intoxication with low blood

levels of

> sodium, seizures, inadequate antidiuretic hormone secretion,

central

> hyperventilation, or antimalarial therapy. Psychosis may, however,

be

> evident without CNS vasculitis. "

>

> Wallace then goes on to describe treatment for lupus psychosis.

>

> So, generally speaking, lupus psychosis, if it occurs at all, is

temporary

> and treatable.

>

>

>

> Not an MD

>

>

> [ ] Re: Oh no, am I going to go crazy??

>

>

> >I didn't say it was impossible, I said it was " not inevitable " .

In

> > over 25 years of medical practice, having seen literally several

> > thousands of patients, I've seen many people with lupus. And not

> > once have I seen one go crazy. It is possible, but not at all

> > likely. It's sort of like reading the doctor's insert for meds;

> > just because all the bad side effects are written down doesn't

mean

> > you will experience them. The odds are quite against it.

> >

> > Being prepared & informed can take away the fear of the unknown,

but

> > inadequate amounts of information (such as the odds on how likely

> > you are to go crazy) can create much more panic than is warranted

> > for the situation. Anything's possible. But is it likely?

>

[Guest guest]

You're welcome, Sue. If you don't have it already, " The Lupus Book " is

excellent:

http://www.oup.com/us/catalog/general/subject/Medicine/Rheumatology/?view=usa & ci\

=9780195181814

(publisher's site; you can find it cheaper elsewhere)

Not an MD

Re: [ ] Re: Oh no, am I going to go crazy??

> Thank you ! That was a good explaination & easy to understand.

> ~Sue in TN

[Guest guest]

LCB,

Unfortunately, I think the lupus " death sentence " myth still persists. All

we can do is try to present the facts when we have the opportunity.

I'm in agreement with you on the psychosis issue. We've had several stories

in the group from people with RA, not lupus, who experienced

prednisone-induced psychosis (or what sounded like it). Given that so many

lupus patients are treated with corticosteroids, and often with much higher

dosages than in RA, I wouldn't be surprised if many of the lupus psychosis

cases are steroid-related.

Not an MD

[ ] Re: Oh no, am I going to go crazy??

> Very true , this being the point that in the context it was

> originally spoken of " attacked her brain, and she

> went crazy. Totally insane. " is very unlikely to happen. Even the

> incidence of ten to fifteen percent for temporary psychosis isn't

> that high.

>

> And yes, sometimes people tend to over sensationalize things. It

> could be that the 'drama queens' don't know about the current

> treatments. It might be good to remember that treatment for lupus

> has come a long way in the last thirty years or so. It used to be,

> more or less, looked upon as a death sentence since before treatment

> people's life spans were seriously shortened. Now with the

> medications and better understanding of the disease we can have a

> nearly normal lifespan, and medical breakthroughs are happening all

> the time. There are new drugs in testing right now that when

> approved, will make even more significant progress against this

> disease.

>

> All in all, da future don't look dat bad!!

>

> LCB

[Guest guest]

Yeah, sometimes the myths are harder to fight than the realities. I

think a lot of the psychoses are medication induced, also.

Roses are red,

psychoses are blue.

I'm not so crazy,

and neither are you!

LCB

>

> LCB,

>

> Unfortunately, I think the lupus " death sentence " myth still

persists. All

> we can do is try to present the facts when we have the opportunity.

>

> I'm in agreement with you on the psychosis issue. We've had

several stories

> in the group from people with RA, not lupus, who experienced

> prednisone-induced psychosis (or what sounded like it). Given that

so many

> lupus patients are treated with corticosteroids, and often with

much higher

> dosages than in RA, I wouldn't be surprised if many of the lupus

psychosis

> cases are steroid-related.

>

>

>

> Not an MD

>

>

> [ ] Re: Oh no, am I going to go crazy??

>

>

> > Very true , this being the point that in the context it was

> > originally spoken of " attacked her brain, and she

> > went crazy. Totally insane. " is very unlikely to happen. Even

the

> > incidence of ten to fifteen percent for temporary psychosis isn't

> > that high.

> >

> > And yes, sometimes people tend to over sensationalize things. It

> > could be that the 'drama queens' don't know about the current

> > treatments. It might be good to remember that treatment for

lupus

> > has come a long way in the last thirty years or so. It used to

be,

> > more or less, looked upon as a death sentence since before

treatment

> > people's life spans were seriously shortened. Now with the

> > medications and better understanding of the disease we can have a

> > nearly normal lifespan, and medical breakthroughs are happening

all

> > the time. There are new drugs in testing right now that when

> > approved, will make even more significant progress against this

> > disease.

> >

> > All in all, da future don't look dat bad!!

> >

> > LCB

>