View Full Version : What if it's NOT Lupus??

09-30-2006, 03:00 AM
Got sick in May - pericarditis (3 times now) and it responds to Prednisone; peripheral neuropathy in right leg; tired all the time; have had Raynaud's for some years (Sjogren's, too.) Positive ANA, but other tests weren't definitive. "Butterfly Mask" (sometimes). Can this be something else? I'm on a lot of meds (Plaquenil, prednisone, methotrexate, neurontin,etc.) so my Rheumatologist is treating it as Lupus. Should I be looking for a second opinion?

10-01-2006, 11:45 AM
It sounds so much like lupus. But, since we are not doctor's here, we cannot tell you if it is or if it is not. If your doctors find that it is not Lupus, it still sounds as if it could be one of the other autoimmune diseases. The treatments for the symptoms you described would essentially be the same if it were another autoimmune disease. The goals of treatment for autoimmune disorders are to reduce symptoms and control the autoimmune process while maintaining the ability to fight disease. The symptoms are treated according to the type and severity.
Autoimmune disorders are conditions caused by an immune response against the body's own tissues. Immune system disorders occur when the immune response is inappropriate, excessive, or lacking. Autoimmune disorders develop when the immune system destroys normal body tissues. Normally, the immune system is capable of differentiating "self" from "non-self" tissue. Some immune system cells (lymphocytes) become sensitized against "self" tissue cells, but these faulty lymphocytes are usually controlled (suppressed) by other lymphocytes. Autoimmune disorders occur when the normal control process is disrupted. They may also occur if normal body tissue is altered so that it is no longer recognized as "self." The mechanisms that cause disrupted control or tissue changes are not known. One theory holds that various microorganisms and drugs may trigger some of these changes, particularly in people with a genetic predisposition to an autoimmune disorder.
Autoimmune disorders result in destruction of one or more types of body tissues, abnormal growth of an organ, or changes in organ function. The disorder may affect only one organ or tissue type or may affect multiple organs and tissues. Organs and tissues commonly affected by autoimmune disorders include blood components such as red blood cells, blood vessels, connective tissues, endocrine glands such as the thyroid or pancreas, muscles, joints, and skin.
Symptoms of autoimmune disease vary widely depending on the type of disease. A group of very nonspecific symptoms often accompany autoimmune diseases especially of the collagen vascular type and include:
fatigue, dizziness, malaise (nonspecific feeling of not being well), fever, low-grade temperature elevations.
Specific autoimmune disease results in: destruction of an organ or tissue resulting in decreased functioning of an organ or tissue (for example, the islet cells of the pancreas are destroyed in diabetes )
increase in size of an organ or tissue (for example, thyroid enlargement in Grave's Disease).
Here is a list of autoimmune disorders:
Hashimoto's thyroiditis
pernicious anemia
Addison's disease
type I diabetes
rheumatoid arthritis
systemic lupus erythematosus
Sjogren's syndrome
lupus erythematosus
multiple sclerosis
myasthenia gravis
Reiter's syndrome
Grave's disease.

I hope that this has been helpful

Peace and Blessings

10-03-2006, 03:07 AM
Thanks for all of the good info. I hope to get answers from my docs, but I have to learn to be patient. I know a diagnoses can take a long, long time. In the meantime, the chance to hear from others is really valuable to me. Thanks again.

10-07-2006, 01:49 PM
I have had 3 different rhemy's since I was dx 4 years ago. I had to leave one after a few months because the office staff made me so angry I had a few choice words. The other I went to for 3 years. I always felt like even he didn't get it. I personally think that they rheumy around here are so use to dealing with elderly peoples arthritis and osteoporosis or whatever else ale's elderly people that he couldn't understand what effects this disease has on a person in their 20's. When I would tell him about my EXTREME fatigue, he would say exercise. I wanted to scream because if I had the energy to exercise I wouldn't be complaining about fatigue. I already know exercise can increase endorphins that can give you energy, but when you are sitting on your couch fighting sleep at 6-7pm you just CANNOT say I think I'll go for a jog.

The point to my whole spiel is that I am now on my third Rheumy (went to a different county) and SHE seems to "get it". She is even coming up with other ideas, a prescription that is only used for fatigue. I can't think of the name know, but when I get I'll post it. Should be soon, appt coming up.