- lupus

[Guest guest]

,

You are correct that there is no cure for lupus. However, lupus is no longer

typically fatal. In fact, most people with lupus have a normal life span.

Lupus can range from relatively mild to deadly depending on what parts of the

body lupus decides to attack and how severely it attacks the body. Steriods are

really not the treatment of choice for lupus in most cases. Various medications

used to treat lupus include

plaquenil (an anti-malaria medication that helps with lupus, rheumatoid

arthrititis, sjogren's, and other autoimmune diseases)

NSAIDS such as mobic, relafen, daypro, etc.

immunosuppressants such as imuran, 6MP, cyclosporin

steriods - treatment for lupus with steriods can range from only an occasional

cortisone injection to a round of a medrol dose pack, to long term use of

steriods

Most doctors try to avoid long term use of steriods to treat lupus because of

the many potentially dangerous side effects. I was diagnosed with lupus in Oct

96 and have never been on long term steriods to treat my lupus. I've had many

cortisone injections both directly into a specific joint and also just a shot in

the butt when I'm in a flare. I've also had several rounds of the medrol dose

pack where you take a tapering dose of steriods for 6 or 7 days. I had to go on

long term steriods in Jan 03 because I was diagnosed with autoimmune hepatitis

(AIH). The treatment for AIH is steriods and immunosuppressants (preferably

imuran). Without treatment, the 10 year survival rate for AIH is only 10%.

However, with treatment, most people with AIH have a normal life span (providing

that the liver responds to treatment).

Other than about 3-4 cortisone injections and 1-2 rounds of medrol dose packs,

the only medications I've been on for lupus are plaquenil and NSAIDS at times

when the joint pain was severe.

I worked full time on a very demanding job for several years after being

diagnosed with lupus. The main change that lupus made in my life was that I

definitely have to make sure I listen to my body and rest when my body tells me

to or I pay a price. It was not until my attacks of acute pancreatitis

returned, that I had to accept that working full time was no longer in my best

interest. Granted, I may be one of the lucky ones with lupus because as far as

we know, I have no organ involvement from lupus. However, there are many people

with lupus who do not have organ involvement.

I have systemic lupus, antiphospholipid syndrome, autoimmune hepatitis, type II

diabetes, and chronic pancreatitis. In all likelihood I will die with and not

from my various diseases. I'm not trying to make light of anyone having to deal

with lupus because it can be a very trying disease. However, living a full life

is definitely still possible in spite of lupus. The key, as in almost all

chronic illnesses, is getting diagnosed as early in the course of the disease as

possible so that treatment and life changes can hopefully slow or prevent the

progression of the disease. The main life changes for someone with lupus

include avoiding sun exposure, being more diligent about getting enough rest,

and eating a healthy well-balanced diet. It is also very important that anyone

with lupus be monitored so that if organ involvement is noted, treatment can

begin immediately. Patients with lupus should have blood work and a urinalysis

done at least every six months. Additionally, anyone with lupus should be

tested for the antiphospholipid syndrome (APS) since 50% of people with lupus

have APS. I was one of the lucky ones with this, also. My original rheumy

never bothered to test me for APS despite the fact that I had low platelets on

occasion and I have a 60% stenosis in my right renal artery. When I switched to

my new rheumy in Jul 02, she was shocked that I had never been tested for APS.

She tested me for both the lupus anticoagulant and the anticardiolipin

antibodies, both of which do pretty much the same things and lead to APS. They

cause an increased risk of blood clots, strokes, heart disease and miscarriage.

Low and behold I did test positive and I am now on coumadin for life in hopes of

preventing blood clots, strokes, and heart disease. No need to worry about

miscarriage since I had a hysterectomy in 1993, at the age of 32. However,

because I have APS, the rheumy tested my 21 year old daughter for it. You

guessed it, my daughter tested positive! She is currently on asprin for life

and may have to move up to coumadin down the road. Now that we know she has it,

she will be monitored very closely from the time she begins trying to get

pregnant. She may have to heparin injections throughout her pregnancy, but with

treatment for APS, her risk of miscarriage is only very slightly greater than

anyone else's.

Okay, I'll get off my soap box.

W