Lupus

Warning: this will be a long one.

Braves, we've already talked a little, and after reading this thread, it sounds like you've got some good info. As you know, my wife was diagnosed with organ-threatening lupus 6 years ago. She fought it for about two years and has been in full remission for about the last four. She's had other related problems to deal with in the interim, but the lupus is still inactive. Here are some thoughts that may help. My apologies for anything you already know. I know you've already been fighting this fight for a while now...

The best book I've found was The Lupus Book by Dr. Daniel Wallace. I bought it the day my wife was diagnosed, and read it cover to cover. It's hard to read because it's written in medical prose, and it's scary, but it will let you know what you're up against.

The basics:
Lupus is a genetic autoimmune disease with no known cure. It causes the body's immune system to become overactive and attack healthy tissues.

All forms of lupus include rheumatoid arthritis. Braves and Honeygirl, if you're not seeing a rheumatologist already, go see one pronto!

There are four levels of severity. Stage I usually involves severe fatigue and a skin rash. Stage IV (which is what my wife has) is organ-threatening. It will cause the patient's own immune system to attack organ systems such as the kidneys, digestive tract, lungs, heart, or brain. In my wife's case, the disease attacked her kidneys. She lost 40% of her kidney function before the docs could beat her immune system back into submission so she could heal.

Even when the disease goes into remission, it's severity will stay the same or grow stronger. In other words, if you have Stage II, you will always have at least Stage II.

The average patient will have a period when the disease is active called a 'flare' that ususally lasts for 18 to 30 months. Then the disease will go into remission, and on average will flare again in 5 to 8 years.

The Lupus Foundation website is a good one. Check it out if you haven't already.

Other conditions that are common in lupus patients are fibromyalgia, chronic fatigue syndrome and chronic pain syndrome.

UV rays will activate the disease or increase the severity of it. My wife's lupus was mildly active, but we didn't know she had it. She spent an afternoon on the beach and the next day she thought she was going to die.

Severe cases of active lupus are treated usually with a combination of cytoxin (chemotherapy) and prednisone. The chemo is to diminish the immune system to stop the damage. I believe the prednisone is to accelerate healing, but I could be mistaken. The treatments are only marginally less miserable than the disease itself. Chemo will make your hair fall out, drain your energy, and make you very nauseous. Prednisone will put weight on like crazy, promote unnatural hair growth, and create what is known as 'moon face'. If you saw the Jerry Lewis telethon a couple of weeks ago, you saw what moon face looks like. He's being treated with prednisone for something. The body will also tend to develop a dependency on prednisone when it's given in large doses for long periods of time. My wife had serious withdrawls to deal with as they weaned her off of it.

My wife's docs also told her to maintain a low protein diet (40g or less per day), and that she could not take anti-inflammatory meds (advil, naproxen, motrin, etc.). I don't know if that's a universal rule for lupus patients or just for kidney patients. You probably should ask your own docs.

Lupus patients have to be treated differently for everything. If you are still seeing a family practitioner, STOP. Go see a rheumatologist, even for a common cold. There are a lot of meds that lupus patients can't take because they stimulate the immune system, which is the last thing you want to happen. Ask lots of questions until you get a feel for what you can and can't do.

My wife's docs have been very opposed to her trying any kind of herbal or non-traditional remedies. Again, anything you want to try, screen it through her rheumatologist and pulmonary specialist first.

Honeygirl mentioned watching your fatigue level. That's absolutely right. Braves, your wife will get in serious trouble if she gets overfatigued. Watch her. Better yet, help her watch herself. And when she says 'stop', stop.

Find a good support group. If it's TBR, great. If not, find some more people who will look out for you. This is a hard, scary SOB to face on your own. I know.

There are some other things I could tell you that have happened to my wife, but her condition is different from your wife, and may not have any relevance. If you (or anyone else for that matter) have any questions or want to talk, my wife and I are always available. PM me, and I'll give you the contact info.

Hope this helps...

 

Thanks again hasbeens..this will be a great help

 

Braves, I am so sorry. My sister has systemic lupus. There is a plethora of information on the "net. Go to www.webmd.com and type in lupus. You will find out all kinds of information, the cause, treatments and medications. Your wife will need all the love and support you can give her. This is truly a debilitating disease but it is manageable. There are specialists that deal with nothing but lupus. Please find one, don't rely on a general practitioner.

Just JM