Lupus Forum - Question For Lupus Patients?

Hi there! Welcome!
First off, yes lupus can cause serious weight loss...Until they start to treat it and then the opposite usually happens (especially with steroids!)!!!

Symptoms...Well that is a hard one. Why? Because 1) the disease starts differently in most people and 2) the disease course is different for everyone.

Let's try the basic symptoms:

1) serious fatigue
2) stiff and achy joints
3) a long term low grade fever
4) weight loss
5) rashes
6) headaches
7) swollen lymph nodes (last longer than normal...2-3 weeks)

after reading the above, you can see that these symptoms can mimic a lot of things...Thus, most people find that it can take years to get a lupus diagnosis.

As for formal diagnosis, there are a list of 11 things from the college of rheumatology...Having four of the eleven means you can be diagnosed with lupus.

Once you are diagnosed, you learn a lot of other things. Some are practical...And some are just from having the disease...

1) they do not know what causes lupus. Most researchers agree that it most likely is part genetic and part environment. What does that mean? Well, it means that there has to be a genetic predisposition for lupus. I believe from some of my current readings that there is believed to be 12 genes invloved with lupus...Six or seven of those have been identified.

2) you will want to have your aunt keep a diary...Of everything she feels. Headaches, nausea, achy joints, fevers, etc. This will help your aunt and the doctor to recognize when she goes into "flares."

a flare is a period of lupus activity. Lupus, in rudimentary terms, is an overactive immune system. The body attacks good and bad cells instead of just the bad cells. If you want the technical side, you would say that in cellular decomposition, phagocytosis does not occur or does not occur correctly.

Flares are when the person with lupus experiences symptoms of their lupus; those items that were mentioned above.

Remissions are when the patient is not showing any signs of an overactive immune system.

To treat flares, prednisone (a corticosteroid) is often used. They try to use the smallest dose possible because steroids cause a lot of changes in the body. Steroids are not a good thing if taken long term...Serious weight gain can occur, a cushinoid appearance can result, your body no longer makes the natural version of the steroid so you have to taper to restart the body, etc.

Between flares, they use medicines to keep you out of flares. There are several of those; common ones are plaquenil, methotrexate, cellcept, cytoxan, etc. These are several types of drugs...But all try to do the same thing, lower the immune system. Thus, they are known as immunosuppressants (although some doctors say that plaquenil is so mild that it barely qualifies for the immunosuppressant title).

That being the case, a lot of us are warned, after being given one or some of the drugs above that you will be immunosuppressed...Meaning your immune system has been repressed and thus you are very susceptible to other illnesses.

Here is the quagmire with that, being sick can cause a flare to be triggered. Stress can also trigger a flare....

Thus, you learn to recognize what triggers a flare in you...Whether it is being sick, being stressed out, not sleeping well, etc. It may even be a combination of things.

However, you quickly learn (and will want to learn) what causes you to flare.

This has gotten too long, so I am going to stop here. Feel free to ask a question about anything here...There are a lot of us here that have lupus and are willing to help if we can!

Hugs,
ladybrannon