I'm Alan, age 57 and have had Lupus since 1974, with involvement of

the kidneys and possibly lupus cerebritus (-5 for spelling). I've

undergone biopsies, bone marrow extractions, and about every other

procedure known to man. I've been in 'remission' since 1980 or so, and

except for minor flares and still being on prednisone (5 mg./daily) am

doing okay. I've spent weeks in a hospital and spent one hellish week

in a coma (thnk you Lupus).

weeks in the hospital and the coma....were those at a

later age or earlier? what happens during a minor

flare? your in remission with just 5mg of pred a day?

shit im on 60 and 400 mg of plaqiunil...cerebritus is

when it attacks the brain??



also please tell me more about the kidney involvement



--- lupusman_2001 <n6vfp@...> wrote:



> I'm Alan, age 57 and have had Lupus since 1974, with

> involvement of

> the kidneys and possibly lupus cerebritus (-5 for

> spelling). I've

> undergone biopsies, bone marrow extractions, and

> about every other

> procedure known to man. I've been in 'remission'

> since 1980 or so, and

> except for minor flares and still being on

> prednisone (5 mg./daily) am

> doing okay. I've spent weeks in a hospital and spent

> one hellish week

> in a coma (thnk you Lupus).

>

>

>









____________________________________________________

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Hi! My name's Robert and I was diagnosed with SLE with kidney

involvement 3 years ago, although the poly-articular (multi-jointed)

arthritis attacks have been with me 3 years before that. The doctor

who saw me here in Los Angeles suspected that the weakening of my

kidneys was due to my many previous experimentation of NSAID drugs in

the Philippines (where I came from).



Back then, on its initial onset, it took 3 months of dealing with

excruciating joint pains before I agreed to see a doctor. the local

internists in manila were quite baffled as to whatever I was suffering

from! I cannot move without pain shooting through every joint in my

body, from my jaws down to my feet, yet without any signs of swelling

nor inflammation. I was just turn 34 then. And out of 8 different

specialists, only one thought of prescribing Prednisone that began at

20mg per day and settled on 10mg daily. That really helped me out!

Thank God for that WQonder Drug. Later on, through research I found

out about the many side effects related to the drug. I half-cared

about that and focused more on the return of physical mobility and

freedom it granted me.



When I migrated here 4 years ago my family told me to quit taking

Prednisone, as it's bad for me and my body. Back then no one knows yet

what was wrong with me. Some believed that probably I was thinking I

was sick but I'm not, or that maybe something is really wrong inside

of me. You see, being the 13th child, I was known to fake my ailments

in the past. "The boy who cried Wolf", to put it mildly. So it took

some time before my siblings did decide to have me checked! 5 months

without Prednisone and before my official diagnosis and emergency

treatment at a UCLA hospital in Los Angeles, California.



Those 5 months of Prednisone-free period cost me my weight, appetite,

unexplainable joint pains that left me close living like a dying plant

with no means of self-powered motion nor mobility. At nights (it

didn't matter whether it was winter, spring nor summer-- I was always

chilling), I had to croak at my wife beside me to turn me on my left

or right side because I can't do it myself. I suffered hairloss due to

taking 300mg Celebrex given by my Mom who thought it might help. I

found out later on that her doctor wrote her the medicine to buy for

me and thought it might work in place of Prednisone!



I couldn't take regular bath because I can't leave my room without

feeling cold and faint. At one time when my wife bathe me, I lost

consciousness for some minutes. I weighed 170 pounds when I first

arrived here but inside those 5 trying months, it fell down to 107! I

was severely anemic by the time my brother drove me to the hospital. I

was swarmed by 6 specialists as soon as word spread about a 36-year

old man who looked 80 because of an unknown sickness! they checked me

up in a separate private room in the vowels of Emergency Section and

tested my range of motion, joints and poured through what medical

records I brought with me.



Then blood sample were drawn and x-rays were done. My brother waited

for me till I was free to go after 6 hours. I was advised to return

the next day for more tests. And that continued on till now. I've gone

through 2 months' administration of 100mg Imuran; 10 months worth of

(IV-based chemotherapy for) Cytoxan and up to 3 grams daily dosage of

Cellcept (Mycophenolate Mofetil) capsules. My daily Prednisone stayed

at 10mg as my standard maintenance dose. Lower than that would mean

not being able to be on my feet longer than an hour. My hips, legs and

feet would then exhibit tell-tale signs of fatigue and unwanted

discomforts I wouldn't bet to go through again.



So now, at 40, I am at my best form (or so say my doctors). Except for

the high presence of protein in my urine, other tests done me are

within acceptable levels. My kidneys are doing better now and all

blood cells also normalized. They're still watching over me though.

Lupus can be one's worst enemy, and they don't want to see me go back

to where they painstakingly tried to reverse.



I am thankful to find my temporary freedom through my prescribed drugs

and the many doctors that supervised my progress. At the moment, I'm

nursing through another complication that almost set me back October

last year: Shingles! I still suffer from itches

(post-herpetic-neuralgia) associated with it so that meant more meds

to counter it were added to my regular Lupus prescriptions!



One thing about having Lupus is: with our autoimmune system weakened,

anything can happen by to compromise our general health. So you better

take care what you do to yourself. Acquiring diabetis through

over-eating is not a welcome note either. Stay away from people with

flu or sniffles. You never know what type of viral mutation will

startup later for you.



I guess I can enjoy the sun far longer than most Lupus patients, but I

try not to overdo it. Hopefully, someday... somehow, a cure for all of

us will come around to permanently free us from all this and enjoy

much fulfilling lives! Take care, everyone!



--- In menwithlupus@yahoogroups.com, "lupusman_2001" <n6vfp@...> wrote:

>

> I'm Alan, age 57 and have had Lupus since 1974, with involvement of

> the kidneys and possibly lupus cerebritus (-5 for spelling). I've

> undergone biopsies, bone marrow extractions, and about every other

> procedure known to man. I've been in 'remission' since 1980 or so, and

> except for minor flares and still being on prednisone (5 mg./daily) am

> doing okay. I've spent weeks in a hospital and spent one hellish week

> in a coma (thnk you Lupus).

>

I have not been diagnosed with lupus by a doctor yet. I never even

thought about it till recently i met some biological family(my mom

was adopted at a young age). And I found out an uncle has been

diagnosed with lupus and his symptoms are very much like my own.



I geuss i can start by most lof my life things seemed normal except

for unexplained fevers. Until I was about 28 im now 36.  I started

having few problems with fatige  and joint pains. Especialy my hands

when i first woke up in morning my hands would be swollen and red

could hardly move my fingers but after i was up for a while it would

go away. Around this time i also broke out with a rash on my backside

at first it was about the size of my wallet. Redish rash puffy

especialy around edges of red area and scaly. thease problems were

never persistant but would come and go. Each time it comes back its

worse than before. now the rash when gets enflamed gos from the

middle of my back to my knees.



In the winter time i seem to have less problems with the rash it will

just about go away except the skin is is slightly discolored and

somewhat flaky. As soon as the weather warms up its comes back full

force and spreads a little more. I do have a rash in my head that

comes and gos in my hair.



I also have problems my arms and hands hurting and sholders. I have

chest pains and pains in my guts.

Things got realy bad about a year ago. I came down with pancreantidus

spent a week in the hospital and just seem like afteri came things

have been so much worse. They arent sure what caused the pancrantidus

they have run a scope through my guts and not seen a problem they

have done ultrasounds on my gaulbladder and liver not seen anything

to cause the pain i suffer. They have done nerve damage tests on my

arms nothing wrong there. The more i go to the doctor the more

frustrated i get one more test and one more time i get that look from

the doctor that makes me feel like im crazy and its just all in my

head somehow. also being tired all the time i did a sleep study that

shows i may have sleep abnia



There are days my arms hurt so bad i would just as soon cut them off

than to have the pain.



I never thought there was a connection between the rash and other

problems i have been having un till i met my uncle who has lupus and

he sufers similar things. His rash breaks out on his back and arms



I was just wondering if my symptons are compariable to with others

that have lupus before i go back to my doctor and have to get that

look again.

I have not been diagnosed with lupus by a doctor yet. I never even
thought about it till recently i met some biological family(my mom
was adopted at a young age). And I found out an uncle has been
diagnosed with lupus and his symptoms are very much like my own.

I geuss i can start by most lof my life things seemed normal except
for unexplained fevers. Until I was about 28 im now 36. I started
having few problems with fatige and joint pains. Especialy my hands
when i first woke up in morning my hands would be swollen and red
could hardly move my fingers but after i was up for a while it would
go away. Around this time i also broke out with a rash on my backside
at first it was about the size of my wallet. Redish rash puffy
especialy around edges of red area and scaly. thease problems were
never persistant but would come and go. Each time it comes back its
worse than before. now the rash when gets enflamed gos from the
middle of my back to my knees.

In the winter time i seem to have less problems with the rash it will
just about go away except the skin is is slightly discolored and
somewhat flaky. As soon as the weather warms up its comes back full
force and spreads a little more. I do have a rash in my head that
comes and gos in my hair.

I also have problems my arms and hands hurting and sholders. I have
chest pains and pains in my guts.
Things got realy bad about a year ago. I came down with pancreantidus
spent a week in the hospital and just seem like afteri came things
have been so much worse. They arent sure what caused the pancrantidus
they have run a scope through my guts and not seen a problem they
have done ultrasounds on my gaulbladder and liver not seen anything
to cause the pain i suffer. They have done nerve damage tests on my
arms nothing wrong there. The more i go to the doctor the more
frustrated i get one more test and one more time i get that look from
the doctor that makes me feel like im crazy and its just all in my
head somehow. also being tired all the time i did a sleep study that
shows i may have sleep abnia

There are days my arms hurt so bad i would just as soon cut them off
than to have the pain.

I never thought there was a connection between the rash and other
problems i have been having un till i met my uncle who has lupus and
he sufers similar things. His rash breaks out on his back and arms

I was just wondering if my symptons are compariable to with others
that have lupus before i go back to my doctor and have to get that
look again.