As I understand it they're trying to interfere with a pathology of the
development of Lupus in hopes of stopping it's progression or slowing it.
How any of this relates to TM, I haven't a clue?
>>
Hi Dave...
Jane here... I am unsure if I am the only TMer on this list with Lupus...But,
just in case I am, I will help educate.... Now...you won't be "clueless"! I
believe in continuing education, as you do...since I noticed you do "research
regularly..." So, for lack of a better word, let's you and I get "educated,"
and then you will see "...posting news related to TM IS a good thing!"
As I said on a prior post, "..during an active Lupus flare my immune system
attacks my CNS leaving me with classic TM!" (just like a virus!) Now, having
said that (given my limited medical knowledge,) I will attempt to briefly, yet
thoroughly, explain the need for the above mentioned drug....and explain how
LUPUS and COMPLEMENT LEVELS relate to "TM".... and why this info is so
important!!!
Complement levels are actually used as a diagnostic tool for lupus...as they
are an indicator as to the activity state of the disease. The more active the
disease, the more havoc it can wreak, such as in TM. If the ability of the
immune system attacking itself could be reversed in its early stages, TM and
many other diseases might be ancient history! During my initial TM attack, my
complement levels were the signaling factor to my Internist that there was an
underlying pysical problem, negating the Neuro's belief that the paralysis was
in my head. If it wasn't for my internist catching this, I wouldn't have been
labeled the "Solumedrol Queen," and might not be walking today.
Lupus, as in TM or MS, is extremely difficult to diagnose...It is not like
there is an AIDS test...Wala.. either you have it, or you
don't...Unfortunately, it took 5 years to diagnose my Lupus....Imagine
this...I actually had my first attack of TM before I was diagnosed with Lupus,
and my real TM diagnosis came after my second paralysis...due to a "more
focused" Neuro... Sadly, with my first attack of TM I was told that I couldn't
walk because it was "all in my head"...The Neuro said I worked too hard,
trying to be a single mom, holding down 3 offices in 3 states was just too
much, and this was my body's way of giving out/taking a break.. He didn't have
a clue...(Get this, when the results of my spinal came in...his exact words
were: "Good news. You don't have Syphilis!" And you're lucky, you don't have
MS either." Needless to say, I wouldn't let that jerk back into my hospital
room...EVER...He was not focusing on my SYMPTOMS... he'd not heard a word I'd
said!!) That paralysis (T-10) was more than 6 months long...yea right... my
body needed a break...some break!
It was during that 6 months that a positive diagnosis for Lupus was made. But,
like I said, it took 5 years of accumulated tests! The only problem, is that
during that 5 year period, many of my vital organs were irreparably damaged.
During that time, my GP who had never seen a case of Lupus kept telling me
"...your tests show that something is wrong, I just don't know what." After
hundreds and hundreds of different tests and various referrals, he kept
telling me... "If we wait, it will eventually show itself...We just have to be
patient." After almost 4 years of feeling crummy, I called Cedars Sinai in
Los Angeles and asked for the name of an Internist who did extensive
research....I was lucky and got one of the best they had.
Unfortunately, there is not a simple blood test that can easily confirm
Lupus... However, there is a clinical list of physical anomalies (at least 4
of these criteria must occur) to denote the presence of Lupus... [I copied
this list from www.lupus.org....]
TABLE 2. THE ELEVEN CRITERIA USED FOR THE DIAGNOSIS OF LUPUS
Criterion Definition
_____________________________________________________________________
Malar Rash Rash over the cheeks
Discoid Rash Red raised patches
Photosensitivity Reaction to sunlight, resulting in the development
of or increase in skin rash
Oral Ulcers Ulcers in the nose or mouth, usually painless
Arthritis Nonerosive arthritis involving two or more
peripheral joints (arthritis in which the bones
around the joints do not become destroyed)
Serositis Pleuritis or pericarditis
Renal Disorder Excessive protein in the urine (greater than 0.5
gm/day or 3+ on test sticks) and/or cellular casts
(abnormal elements the urine, derived from red
and/or white cells and/or kidney tubule cells)
Neurologic Seizures (convulsions) and/or psychosis in the
absence of drugs or metabolic disturbances which
are known to cause such effects
Hematologic
Disorder Hemolytic anemia or leukopenia (white blood count
below 4,000 cells per cubic millimeter) or
lymphopenia (less than 1,500 lymphocytes per cubic
millimeter) or thrombocytopenia (less than 100,000
platelets per cubic millimeter). The leukopenia
and lymphopenia must be detected on two or more
occasions. The thrombocytopenia must be detected
in the absence of drugs known to induce it.
Immunologic
Disorder Positive LE prep test, positive anti-DNA test,
positive anti-Sm test or false positive syphilis
test (VDRL).
Antinuclear
Antibody Positive test for antinuclear antibodies (ANA) in
the absence of drugs known to induce it.
Adapted from: Tan, E.M., et. al. The 1982 Revised Criteria for the
Classification of SLE. Arth Rheum 25: 1271-1277.
Please note that this is a fairly old list, and appears to be incomplete...I
couldn't find a more updated list of criteria.. (FYI - I have 10 of the 11
criteria listed) Although I know the list is still much the same, a few
things have been added to it.. Such as the reference to complement levels
C3/C4 which tend to drop relatively low during a flare... Please note that
complements are very active during a flare...and usually are a red-flag to the
docs that something is brewing...If it is possible to control the bodies
ability to manufacture antibodies and find a drug to stabalize the overactive
complement levels... It would be conceivable that Lupus would then become a
managable disease...and TM would no longer be a secondary condition.
These were the important factors in my Lupus diagnosis: Months of documented
low level C3/C4, regularly elevated ANA tests, unexplained anemia... and much
of the above criteria was met.
As for my medical history... I am 37 years old, with a 16 year old son... I
have Systemic Lupus/Mixed Connective Tissue Disease and Reoccuring TM...I have
been thru the gamot of medicine -solumedrol, cytoxin, etc.... I have been
hospitalized 4 times in the CICU with life threatening arythmias &
pericarditis, 6 episodes of TM (3 lasting 6+ months each) with paralysis from
T-10 down w/ scarring on my MRI. I was hospitalized 5 1/2 weeks in isolation
with life threatening septicemia. Although, I've been hospitalized many more
times than listed here... There were 3 other different life threatening
illnesses, brought about by a Lupus flare, 1) serrositis, 2) paratonitis and/
pancreatitis and 3)pluerisy (with 6% lung capacity)... The doctors say I am a
living, breathing walking miracle... I KNOW I AM!!!!
Janie