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).
>