Lupus

[Braves]

Does anybody know about this disease? My wife found out about 8 months ago that she has it internally. She is slowly debilitating as this disease is eating her muscles. I don't know of anybody who has this disease nor do I feel I have as much info about it as I should. Does anybody know of anybody that has this dreadful disease? What are they taking..what are they doing to help themselves? Thanks for any info

[SilverSurfer]

I'm sorry to hear about that Braves. I don't know much about it myself, this may help:

http://www.lupus.org/

[Stargazer]

Braves, I'm sorry, I don't know anything about it other than the fact that it is a serious disease. I am sorry that you and your wife have to deal with this problem. I'll be keeping you in my thoughts and will forward any info I might run across.

[Puttingood]

I will find out about it.:)

[WilliamJ]

Originally posted by Braves
Does anybody know about this disease? My wife found out about 8 months ago that she has it internally. She is slowly debilitating as this disease is eating her muscles. I don't know of anybody who has this disease nor do I feel I have as much info about it as I should. Does anybody know of anybody that has this dreadful disease? What are they taking..what are they doing to help themselves? Thanks for any info

One of the girls I work with mother has it....I'll talk to her tomorrow and get back...

[Braves]

Thanks guys. I debated whether to say anythng because I wasn't looking for a pity party...but this is one of the great things about this board. There is always somebody who knows something. Again, thanks for your kind words and am hoping for some informative responses.

[Patti]

I am sorry about that Braves.. I don't know anything about Lupus but I have researched other medical conditions on the web and have always found an abundant of stuff. I think the best way to start is just to search Lupus and you will get a few thousand sites.

The best are the hospitals with online information you can trust them to have correct information. WEBMD.com JohnHopkins.com

[sadic1]

Sorry to hear that, Braves. I know somebody who has had it for a long time and appears to live a normal life. She was concerned about any possible negative ramifications that having kids would cause for her or the baby, but is going through with it with her doctor's approval, so for her it doesn't seem too bad a prognosis. I don't know how many different types there are or what the range of progress and symptoms of the disease is.

[Fred]

It is an autoimmune disease that weakens the immune system but is not passed on like HIV, it is hereditary. I’m so sorry to hear about that Braves- is she on a shit-load of steroids to boost her immune system?

[Braves]

Originally posted by Fred
It is an autoimmune disease that weakens the immune system but is not passed on like HIV, it is hereditary. I’m so sorry to hear about that Braves- is she on a shit-load of steroids to boost her immune system?

Yes, including Prednazone..she hates that stuff. The drs, are not real up to date on Lupus. I have read a lot of info, but don't know anybody who has it. There are two types: External, which many people have noticed. People with rashes all over their face. Although this can become unsightly, it is not deadly. The other type is internal. As Fred described, it destroys cells and musculature. My wife is 39, of course she may be 39 for a few years..age does make a difference.

[jbghostrat]

Braves hb's mom had lupus. i was just asking him about it. She was on prednisone. He did some research and found this stuff that some actor takes and it's suppose to work. He ordered the stuff from Canada but she died before it came so he don't know how good it works. btw, she didn't die from lupus but from a freak accident. He took care of his mom when it got bad so he should know, but right now he's watching the ball game.

[Braves]

Originally posted by jbghostrat
she didn't die from lupus but from a freak accident.

I'm glad you cleared that up

[Puttingood]

whats the signs ?

[Fred]

(From www.askjeeves.com)


What are the symptoms of lupus?
Symptoms of lupus often mimic other less serious illnesses.
Symptoms can range from mild to life-threatening.
Lupus can go into periods where symptoms are not present, called remission.
Although lupus can affect any part of the body, most people experience symptoms in only a few organs.
The following lists the most common symptoms of lupus and the percentage of lupus patients who experience them.


Symptom Percentage of Cases

Achy joints (arthralgia)
95%
Frequent fevers of more than 100 degrees F.
90%
Arthritis (swollen joints)
90%
Prolonged or extreme fatigue
81%
Skin rashes
74%
Anemia
71%
Kidney involvement
50%
Pain in the chest on deep breathing (pleurisy)
45%
Butterfly-shaped rash across the cheek and nose
42%
Sun or light sensitivity (photosensitivity)
30%
Hair loss
27%
Abnormal blood clotting problems
20%
Raynaud's phenomenon (fingers turning white and/or blue in the cold)
17%
Seizures
15%
Mouth or nose ulcers
12%

[jbghostrat]

Originally posted by Braves


I'm glad you cleared that up


yeah, i guess that didn't sound too good, huh? i know she use to be in a lot of pain sometimes but she was always on the go. she was like a mtn. woman. she even chewed redman tobacco. She's the lady i found dead when i was younger. I walked right in her house and their she was stiff as a board. she had cut her leg and bled to death.

[Puttingood]

. she had cut her leg and bled to death.


:confused:

[Patti]

Was she a hemophiliac? Did some of the medicine she was taking make her blood thin?

[Fred]

Female hemophiliac are rare!

[Patti]

Originally posted by Fred
Female hemophiliac are rare!

Couldn't some of the medicine she was taking cause her to have thinning of the blood?

[Fred]

Oh yeah! Coumadin is the most used blood thinner. Aspirin can do the same thing but not as bad. I have seen people on Coumadin come in to the ER from SIMPLE car wrecks and they bled to death from an injury that would have just left a bad bruise on you or I.

[jbghostrat]

I'm not really sure. i think she had something done at the drs. to her leg right near her ankle and somehow she hit her leg on that place and it was on the artery and i guess she couldn't get it to stop bleeding. She wouldn't answer me when i called her name and the door was open so i just walked in and she was sitting in this chair she had in the bathroom and had about 5 towels around her leg and the whole bathroom was covered in blood.

[wossa]

I don't know very much about the disease.

My sisters first husband died from it before heturned 30. He walked out on her well before that so I don't know what all his symptoms were.

There is a neighbor and church member who has lupus. About three years ago she was in real bad shape. She looked horrible and people were talking like she wasn't going to make it.

But today she looks great. Not sure if she's cured or just managing the disease. I wil check into her situation and let you know how/what she did to get so much better.

Best of luck to you, your wife and family.

[Honeygirl]

Braves...
I have Lupus disease - and I've had it for about ten years, give or take a few. Actually, I was relieved that the Doctors finally found out exactly what was causing my chronic fatigue, aching joints, and sensitivity to sunlight. In hindsight, I think I probably had it for years earlier, but didn't realise it.

To be honest, the first couple of years of this disease knocked me around something terrible. The psychological effects were perhaps more crippling than the actual disease. I was devastated that I had something that was potentially life threatening, and that it was a life long condition.

I guess over time, once I got used to having it - I basically took control of it - and thought - `I'm not going to let it ruin my life'. Since having that attitude, it's made a huge difference. In saying that though, I still have shitty days - and can't push myself to the extreme like I used to. When I need to rest - I need to rest. I'm getting better at that side of things - but it does take a bit of getting used to.

What is essential - is having understanding and tollerance. My moods were, well - wobbly to say the least, especially in the first year or so. I also suffered from depression - probably a combination of the meds and the of having a `disease' with such a stupid name!

Anyway - I've gone on too long with this post. :) Hope she is well and knows that you can lead a full life with lupus - it just takes a bit of adjusting, and being kind to yourself. :)

[mramailman]

Braves and Honeygirl, I am sorry that this disease has struck in your families and hope things get better for everyone.

I work with a great man at the Post Office that after being wounded in Vietnam, not once but twice, came home to find out his beautiful bride had this disease. Mrs. Erlease wasn't properly diagnosed for quite sometime but she initially had problems in 1976. One of Lupus' worst and debilitating effects is the achy joints as has already been mentioned. What that is, is a very slow process of destroying the joints. After a long period of time the joints will actually rot away, which is what happened to Mrs. Erlease.

She passed 2 months ago after 27yrs. of living with and fighting this disease. It was at it's worst a few weeks before she passed. Her shoulder had rotted away and after that she seemed to give up.

I think alot of James Webb. He is in my mind like I said before a great man. When my mom was sick and things didn't look good at all this man would cheer me up and would tell me to keep my head up..he really helped me during that time. The day after Mrs Erlease passed when I saw him the first thing he asked was "how's momma?"

Lupus is a slow moving disease and in Webb's words something you can't let control you. Live life and enjoy it.

[Braves]

Believe me Honeygirl, you did not go on long enough. It's actually comforting to read someone's else experience. I believe my wife has had symptoms for many years, starting with unexplained seizures. Physically, the hardest part for her is the pain in her knees. She has always been a very, very active woman, but on rainy days she can barely walk.

Mramailman..thanks, great story!

[Honeygirl]

Thanks Braves...I worried a little that I was ranting there for a bit!
My last severe lupus attack was last winter. My whole body ached - it was horrific. Nothing seemed to touch the pain. Once a year I also get a bad attack of arthritis in my foot - but I tend to get more ongoing problems in my hands - which is a real bugger.

I know that this is going to sound very lame, but the thing that devastated me the most, initially anyway, was the weight gain from the steroids. It's a horrible catch 22 situation - to work the weight off - you need to exercise - to exercise - you need to move without pain. Ironically, I was diagnosed with Lupus after losing a huge amount of weight, and keeping up with a punishing exercise routine. I was exercising in the midday sun, came home and nearly collapsed. My fatigue lasted for days before my Doctor twigged that I could be suffering from Lupus - he did the tests - and bingo.

As I said though - some days are better than others. Rainy days - now they're a killer! Hot water bottles, and sheepskin electric blankets are just divine for days when you're feeling wobbly. Also, I've found freshly juiced vegetable juice with carrots, celery, and parsley gives the immune system a good boost when you feel fatigued and know that you're heading for an `episode'. You may want to do some more reading up on what other options are available via homeopathic remedies. They haven't `cured' me - but it's certainly worth reading into. Personally, it was worth it for me, because the medications that I was prescribed were quite damaging to my kidneys and liver. I'm certainly not saying throw away the meds...but perhaps suppliment (with Doctors approval of course) the meds with some extra vitamins and good quality vegetables. I've also found fish oils helped ease the arthritic pain somewhat. I'm not sure if that's scientifically proven - but it helped me.

If she ever wants to chat about it - have a bitch or moan to someone - feel free to PM me. As I said, psychologically, it took some getting used to. I was scared, anxious and felt totally out of control. It took a good couple of years before I felt that I was managing it - and not the other way around.

Oh God - I'm going to get a reputation for having the longest posts around here! :)

[p2k1f]

I know 2 survivors - 1 I don't know how to get a hold of - the other, I saw her husband a couple days ago and know where he's working, so i'll stop by and ask for some info. she is the type to know about supplements, homeopathic remedies and diet - which i'm sure is important. doug's a construction worker and artist who always is working in downtown. - hope he's still on the same job. his wife, the one with lupus, looked rough for 1 or 2 years, but since then she's looked great. oh yeah, she owns a juice bar in downtown asheville so i can just find her.

[Tioted Snoil]

just to follow up on honeygirl's joint pain being helped by fish oils....certain oils have anti-inflammatory effects on the body which ease pain in joints. The best one from what I know doesn't come from fish but a seed. It is called flax seed oil. It is also a great source for omega 3 fatty acids. All the oils come in gelcaps and you can get them at drugstores and gnc. You may want to experiment to see which one works best for her.

There are all kinds of natural and herbal arthitis products out there that help with joint pain...they are kinda pricey because senior citizens by them by the case...many swear by them. The benefits are that they are not metabolised by the liver. Many drugs, like ibuprofen (tylenol) will eat a whole in the liver if taken at high dosages for long periods of time. Generally, anytime you see "not to be taken with alcohal" on a prescription bottle means it is metabolised by the liver.

You may also want to look into natural treatments...many times the medical profession will ignore positive results from natural treatments. Anti-biotics stopping stomach ulcers come to mind...natural treatments had included cabbage juice for years and it worked yet the medical profession ignored it (cabbage juice has and anti-biotic effect). Be wary of quacks trying to make a buck.

It is not the same in scope but I had severe tendonitis in my ankle for months...taking all of the standard prescription ant-inflammatories did not work...something I bought over the counter called "Joint Ease" got rid of it.

[Tioted Snoil]

supposeably the best thing to boost the immune system is the juice some type of grass. One small glass (maybe a quarter of a cup) is worth something like a whole week's worth of veggies. I can't remember the name but you have to get it fresh and drink it right away. I know Carolina Smoothy by South Park has it.

[Braves]

Thanks Tioted and everybody for your help. I knew this was a good place to come for info, especially the alternative medicine.

Please keep the info coming and experiences from people that you know, except for Wossa and JB. I wasn't too thrilled to hear about somebody passing away ;) J/K. I know you mean well.

[hasbeens99]

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 (http://www.amazon.com/exec/obidos/ASIN/0195132815/qid=1032383168/sr=2-2/ref=sr_2_2/002-9155350-3234444#product-details) 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 (http://www.lupus.org) 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...

[Braves]

Thanks again hasbeens..this will be a great help

[Just JM]

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