- 01-02-2005, 10:18 AM
I NEED HELP!!!!!! again i know....
I got up this AM and I have the damn rash ( red on face) its called a butterfly rash, around your nose, eyes, face and HURT!!!!! Anything holistic I can take to get rid of it..??? If i go to my dr, he will want to put me on prednosone..and I dont want to go on it.....I am afraid if i go on it , it will mask the lupus and i wont get off it...and lastly I will get fat....
Anything, anyone can think of????????
- 01-02-2005, 10:53 AM
- 01-02-2005, 11:15 AM
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Originally Posted by wranglergirl
01-02-2005, 02:18 PM
thanks for the help!!!!!! I am going to go hide my face now... this sucks......Like i dont have enough trouble getting a date......LOL Now i have this terrfic face rash going on.............but thanks I will look into the link.. and never heard of the book...........
01-02-2005, 04:45 PM
I don't blame you for not wanting to take prednosone. It's a very harsh steroid that strips women of calcium causing early symptoms of osteoporosis, and other side affects.
I think there was someone talking on another thread about a holistic healing book that you can check out for free at any Vitamin Shoppe for two weeks.
01-02-2005, 04:59 PM
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I do want to get that book. Check it out if your up late sometime. Kevin trudeau(sp.?) is in it. Him and another guy sitting at a desk.
01-02-2005, 05:11 PM
I've seen those commercials, they pimp other products like those fat loss pills that cost 100's of dollars, not so sure about their intent. Anyway I hope you find something WG.
01-02-2005, 05:36 PM
Found this on another site...hope it helps..
Some of the best nutrients to help treat lupus are essential fatty acids. Essential fatty acids can help to reduce inflammation and pain caused by lupus.
Almost all of the B vitamins also play a crucial role in eliminating the pain and skin rashes that lupus disease may cause.
A deficiency of vitamin A can actually worsened the symptoms of lupus, but when it comes to vitamin A, you should be very careful because this vitamin in excessive amounts can be harmful.
This vitamin helps tissue healing so it is very important in the treatment of lupus disease.
Vitamin E helps to clear any rash caused by lupus. In some instances, vitamin E. can cause your blood pressure to increase. Vitamin E oil can be rubbed directly on any rash.Vitamin E and selenium work together to help your body eliminate the free radicals in those suffering from lupus disease
If you have lupus disease or want to try and avoid getting lupus, one very important thing you can do is make sure you take a high quality, daily multi vitamin / mineral supplement, and use the additional nutrients mentioned.Unfortunately, contrary to popular belief, you can’t get all of the nutrients needed to treat lupus from the food you eat. You must use supplements
01-02-2005, 05:37 PM
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Well I am sure the book has a lot of usefull information. Some infomercial products are worthy though. My mother-in-law has the gazelle, I tried it out when I was there for christmas and I love the thing. Its much better than any type of cardio equipment you can find in a gym. I agree though that most infomercial stuff is crap.
01-03-2005, 07:03 PM
thanks for the help.....I am afraid nothing is helping.....the rash is worse and i have had to make an appt with my lupus dr who I know is going to INSIST on prednosone..and I dont want to go on it.......But yet i know it will make this go away ( the rash)
01-04-2005, 12:35 PM
tazorac maybe?? It helps with acne, psoriasis, and other skin conditions
01-04-2005, 01:39 PM
ummm theres a reason a doctor prescribes it-
butch up- take the med's and get better' baby.
we dont want to hear how our favorite girls not well :-(
01-04-2005, 07:19 PM
Butch up and get FAT!!!!!!!!!! NEVER!!!!!! I will just buy a scarf and pretend I am from another country that cant show there faces, that should work.........
01-05-2005, 12:00 AM
get fat? whats this get fat talk? every avatar i've ever seen of you imo could use about 5-10lbs of extra fat anyway (possibly even more)...
dont be so harsh on yourself, girl... personal opinions are always inflated in some form or another (negative or positive, left or right, etc)...
Now concerning the other sides mentioned such as stripping calcium, etc... that would be something to be more worried about than 'getting fat'... from what it sounds like, you think you'd be fat if you weighed 135lbs? you look about 115 in the picture as it is
perk up, you'll be ok
01-05-2005, 01:12 AM
Take the med's
your doctor wouldnt prescribe it if he thought youd be worse off, for it-
01-05-2005, 06:25 PM
I want to try it my way first!!! I am very stubborn!!!! I went today and he wants 70 mg of prednosone..and i am not happy, not any talk of 70, 60. 50 the weaning ****, nope 70 and come back to see me in 2 weeks............
As for the fat I know what it does to you, the puffy face, the weight gain around the middle, and it hides the real issue although in lupus I know it helps........
Anyway i getting discouraged trying not to.......but i am I admit it...........
01-05-2005, 08:12 PM
I have a book entitled "Prescription for Nutritional Healing" by James F. Balch, M.D. and Phyllis A. Balch, C.N.C. There are herbal/diet/supplement recommendations toward the end of this section. Here's what they indicate beginning on page 369 about Lupus, if you're interested:
Lupus is a chronic inflammatory disease that can affect many of the body's organs. It is an autoimmune disease- that is, it occurs when the immune mechanism forms antibodies that attack the body's own tissues. Many experts believe that it is due to an as-yet unidentified virus. According to this theory, the immune system develops antibodies in response to the virus that then turn on the body's own organs and tissues. This produces inflammation of the skin, blood vessels, joints, and other tissues. Heredity and sex hormones are two other possible factors.
This disease was named lupus, which means "wolf", because many people who get it develop a butterfly-shaped rash over the cheeks and nose that gives them something of a wolf like appearance. At least 90 percent of those who contract lupus are women, and women of Asian background appear to be at greater risk of developing lupus than other women. It usually develops between the ages of fifteen and thirty-five, although it may occur at any age.
There are two types of lupus: systemic lupus erythematosus (SLE) and discoid lupus erythematosus (DLE). As the name implies, SLE is a systemic disease that affects many different parts of the body. The severity can range from mild to life threatening. The first symptoms of many cases of SLE resemble those of arthritis, with swelling and pain in the fingers and other joints. The disease may also appear suddenly, with acute fever. The characteristic red rash may appear across the cheeks; there may also be red, scaling lesions elsewhere on the body. Sores may form in the mouth. The lungs and kidneys are often involved. Approximately 50 percent of those with SLE develop nymphomania [sorry, actually it's nephritis, just seeing if you're paying attention ; ) ] inflammation of the kidneys. In serious cases, the brain, lungs, spleen, and/or heart may be affected. SLE can cause anemia and inflammation of the surface membranes of the heart and lungs. It can also cause excessive bleeding and increased susceptibility to infection. If the central nervous system is involved, seizures, amnesia, psychosis, and deep depression may be present.
The discoid type of lupus is a less serious disease that primarily affects the skin. The characteristic butterfly rash forms over the nose and cheeks. There may also be lesions elsewhere, commonly on the scalp and ears, and these lesions may recur or persist for years. The lesions are small, soft yellowish lumps. When they disappear, they often leave scars. If these scars form on the scalp, permanent bald patches may result. While DLE is not necessarily dangerous to overall health, it is a chronic and disfiguring skin disease. Some experts have related it to a reaction to infection with the tubercle bacillus.
Both types of lupus follow a pattern of periodic flare-ups alternating with periods of remission. Exposure to the sun's ultraviolet rays can result in a flare-up of DLE and may even induce the first attack. Fatigue, pregnancy, childbirth, infection, some drugs, stress, unidentified viral infections and chemicals may also trigger a flare-up. Drug induced cases usually clear up when the drug is discontinued.
According to the American Rheumatism Association, four of the following eight symptoms must occur, either serially or at the same time, before a diagnosis can be made:
1. Abnormal cells in the urine.
3. Butterfly rash on the cheeks.
4. Sun sensitivity.
5. Mouth sores.
6. Seizures or psychosis.
7. Low white blood cell count, low platelet count, or hemolytic anemia.
8. The presence in the blood of a specific antibody that is found in 50% of people with lupus.
A kidney biopsy may be needed to diagnose lupus-related nephritis.
The following are nutrients and herbs recommended:
1. Very Important:
Calcium 1,500 - 3,000 mg daily
Magnesium 750 mg twice daily (Both necessary for pH balance and for protection against bone loss due to arthritis)
L-Cysteine and L-Methionine 500 - 1,000 mg each daily, on an empty stomach. Take with water or juice. Do not take with milk. Take with 50 mg vitamin B6 and 100 mg vitamin C for better absorption. (Assist in cellular protection and preservation; important in skin formation and in white blood cell activity.)
L-lysine 500 - 1,000 mg daily on an empty stomach. (Aids in preventing mouth sores and offers protection against viruses.)
Proteolytic enzymes As directed on label, Take with meals. (Powerful anti-inflammatory and antiviral agents)
Essential fatty acids (black currant seed oil, flaxseed oil, and primrose oil are good sources), as Directed on label (Aids in arthritis prevention, protects skin cells, and needed for reproduction of all body cells.
Glucosamine sulfate or N-Acetylglucosamine (N-A-G from Source Naturals) As directed on label (important for healthy skin, bones, and connective tissue. May help to prevent lupus erythematosus.
Garlic (Kyolic) 2 capsules 3 times daily with meals. (An immune system enhancer that protects enzyme systems)
Raw thymus and raw spleen glandulars As directed on label (Glandulars that enhance thymus and spleen immune function
Vitamin C 3,000 - 8,000 mg daily (Aids in normalizing immune function)
Zinc 50 - 100 mg daily (do not exceed this amount) (Aids in normalizing immune function, protects the skin and organs and promotes healing. Use zinc gluconate lozenges or OptiZinc for best absorption.
Acidophilus As directed on label. Take on an empty stomach. Protects against intestinal bacterial imbalances. Use a nondairy formula.
Herpanacine from Diamond-Herpanacine Associates, as directed on label. (Contains a balance of antioxidants, amino acids, and herbs that promote skin health)
Kelp or alfalfa 1,000 - 1,500 mg daily. (Supplies commonly deficient minerals)
Multivitamin and mineral complex (To supply commonly deficient nutrients. Use a high quality hypoallergenic formula)
Vitamin B complex 50 mg 3 times daily, with meals. (Heals mouth sores, protects against anemia, and protects the skin tissues. Important for brain function and digestion.
Pycnogenol or grape seed extract (as directed on label) Powerful antioxidants and free radical scavengers that protect the cells.
Vitamin A 25,000 IU daily. If you are pregnant, do not exceed 10,000 IU daily. (Potent antioxidant and free radical scavenger needed for tissue healing. Use emulsion form for easier assimilation.
Natural beta-carotene 15,000 IU daily (An antioxidant and vitamin A precursor.
carotenoid complex (Betatene) As directed
Vitamin E 400 - 800 IU daily. Powerful antioxidant that helps the body use oxygen more efficiently and promotes healing.
Alfalfa is a good source of minerals needed for healing
Alcohol-free goldenseal extract is good for mouth sores or inflammation. Place a few drops on a small piece of gauze or cotton before bedtime and leave it on overnight for fast healing. (Caution: Do not take goldenseal internally on a daily basis for more than one week at a time, do not use it during pregnancy, and use it with caution if you are allergic to ragweed.
Other herbs beneficial in treating lupus include Echinacea, feverfew, pau d'arco and red clover. Caution: do not use feverfew during pregnancy.
Milk thistle cleanses and protects the liver.
Yucca is good for arthritis-type symptoms.
Eat a diet low in fat, salt and animal protein - this kind of diet is easy on the kidneys. Use only canola or olive oil. Consume sardines often; they are a good source of essential fatty acids.
Eat asparagus, eggs, garlic, and onions. These foods contain sulfur, which is needed for the repair and rebuilding of bone, cartilage, and connective tissue, and aids in the absorption of calcium.
Include in the diet brown rice, fish, green leafy vegetables, nonacidic fresh fruits, oatmeal, and whole grains.
Eat fresh (not canned) pineapple frequently. Bromelain, an enzyme present in fresh pineapple, is excellent for reducing inflammation.
Use some form of fiber daily.
Do not consume milk, dairy products, or red meat. Also avoid caffeine, citrus fruits, paprika, salt, tobacco, and everything that contains sugar.
Avoid the nightshade vegetables (peppers, eggplant, tomatoes, white potatoes). These foods contain a substance called solanine, which can contribute to inflammation and pain.
Get your iron from food sources, not supplements. Taking iron in supplement form may contribute to pain, swelling, and joint destruction.
Avoid eating alfalfa sprouts. They contain canavain, a toxic substance that is incorporated into proteins in place of arginine.
Get plenty of rest and regular moderate exercise.
Avoid strong sunlight and use protection from the sun. Go out in the sun only when absolutely necessary.
Avoid large groups of people and those with colds or other viral infections. Autoimmune diseases such as lupus render an individual more susceptible to viral infections.
Avoid using birth control pills. They may cause lupus to flare up.
A test for food allergies is helpful and often very revealing in cases of lupus.
Some researchers believe that faulty genes are the ultimate culprit behind this disorder, but that outside factors can trigger it. Substances that are common contributing factors include chemicals, environmental pollutants, food additives, and some foods.
Up to 10 percent of lupus cases are probably caused by drug reactions, according to an article that was published in The New England Journal of Medicine. Certain drugs, such as hydralazine (Apresoline), a blood pressure medication, and procainamide (Procan) used for irregular heartbeat seem to be able to cause lupus in susceptible individuals. Drug related lupus usually does not affect the kidneys or nervous system. It is likely to be milder, and the condition usually subsides when the drug is stopped.
Many people with lupus also have Raynaud's disease. Some have been treated for syphilis because the condition can lead to false positive blood test results.
Many different treatments are used for lupus. Anti-inflammatory drugs are usually used first. Antimalarial drugs such as hydroxychloroquine (Plaquenil) may alleviate the skin problems and sun sensitivity that afflict those who have lupus. In severe cases, physicians may have to use cortisone and immunosuppressive agents to induce remission. Corticosteroids, such as prednisone (Deltasone and others) are adrenal hormones that are considered important in the treatment of lupus. Anticonvulsants, drugs used to control seizures, and warfarin (Coumadin), an anticoagulant used to prevent blood clotting and reduce the possibility of stroke or heart attack, may also be prescribed. All of these drugs, especially the corticosteroids, have potentially serious side effects.
Dehydroepiandrosterone (DHEA) therapy has been found to help in treating lupus.
Radiation treatment for lupus is in the experimental stages. It involves using low doses of radiation to the lymph nodes to suppress the immune system. Anticancer drugs are sometimes used to decrease both the immune system's responsiveness and the need for steroids. Anticancer drugs may be toxic to the bone marrow and must be used with caution. Another experimental treatment for lupus involves plasmapheresis, a process in which harmful anti-antigen complexes are filtered out of the blood plasma.
Mild cases of lupus respond well to supplements that build up the immune system.
Further information on lupus can be obtained from the Lupus Foundation of America. 800 558-0121
Hope that helps!
01-06-2005, 04:12 PM
Geez, PC1 you just typed that whole chapter or what?
Seems we all have that book, and soon you will too, WG..
01-06-2005, 04:30 PM
Originally Posted by bigpetefox
One of a very FEW classes I ever got anything USEFUL out of high school was typing! So it didn't take long.
As I was reading through that section, each part seemed worthwhile to know if you're someone who has to deal with that. Oftentimes we don't get the complete picture from our doctors, and rarely, if EVER do they seem to get involved with recommending specific foods/vitamins/herbs to take or not take....... so. Anyway, there it is.
I won't get into the fact that she looks good in those jeans, or that she seems to be about the only female who shows up around these parts.......... oh, I guess I just did get into that, huh?
01-06-2005, 06:51 PM
Thanks guys!!!! all these compliments gosh I hope you still think that when i get fat!!!!!!!! I was at the gym tonight doing legs and when i say I literally "bumped" into a leg press machine with my right knee ( my bad one) it started to bleed so bad that I now have 4 stitches in my knee!!!!!!!! And I mean I did not hit it that hard??!!!!!!!!
Seems like this lupus will kick my ass after all, no matter what i do, or try it isent working............( i wont whine) but damnit!!!!!!!!!
01-06-2005, 08:31 PM
Damn girl, bumping into leg presses and other equipment to get stitches is MY job..
Seriously.. hang in there, you are just getting used to what you can and can't do.. you might be doing more in a little while..
01-06-2005, 08:41 PM
Ya, hang in there WG, Sorry to hear about what you are going through, but keep in mind that you have lots of good people here conserned for you.
01-07-2005, 06:54 PM
Thanks to all, and yes SR, i know people care but i hate this , I hate what its doing to me and how limited i am now, I wont tolerate this crap!!!!!!!!!!!!!!!!!!!!
01-07-2005, 07:40 PM
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Damn Wrangler I feel for you. Whatever happens though dont give up and give yourself what you need to heal before beating yourself up in the gym. Good luck and hang in there
01-07-2005, 09:34 PM
Not time to heal!!!!! I have to keep pushing and trying or I admit defeat!!!!! And I wont
01-08-2005, 02:32 AM
sorry to hear what your going through, just try to keep your spirits high.
01-09-2005, 10:28 AM
Well the rash is gone, i broke down and took the damn prednosone, I had to get rid of the redness and the pain...........So now what???? stop taking it cold turkey, or tapper myself down.....????????
01-09-2005, 10:51 AM
01-09-2005, 02:20 PM
thanks i kinda thought the taper down way myself!!!!!!!
01-10-2005, 10:49 PM
Remember my wheelchair comment...Originally Posted by wranglergirl
01-11-2005, 07:27 PM
01-14-2005, 07:50 PM
- 5'10" 180 lbs.
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Good luck fighting lupus. Which of the 2 types do you have? Do you know?
01-15-2005, 01:17 PM
systemic lupus erythematosus or SLE or i just call it lupus.......I have the in the middle thing, if i dont start to take it easy it could be an issue, but right now its close monitering and medication, i am considered one of the lucky ones......
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