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What to do when someone tries to sell you a "cure" for lupus
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Lupylisa44 posted:
When someone tells me that they have a friend of a friend, of a friend who has something that supposedly cures lupus.(which usually costs two arms and 6 legs)

I act all excited, then ask (using my OMG maybe there is a cure voice): does it boost the immune system?

Their answer is usually YES, IT DOES!!!

To which I reply (using my sad, there is no cure for lupus voice)

OH, NO! Immune boosters are exactly the opposite of what I need.

It usually works to shut them down in their tracks especially if they are trying to sell it to you!
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jessi19661 responded:
Excellant, lupylisa!! There is NO cure, and very little that really helps, as we all KNOW deep inside. It is very hard to remember sometimes, when sometimes it seems that the meds are maybe worse than the disease, but they are REALLY NOT.....be strong and dont give up ur hard earned cash$$ for something that could INDEED MAKE YOU WORSE!!

NONE of us needs to be WORSE!!!
 
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squirmy1963 responded:
I have had many good-hearted people tell me or give me immune booster vitamins and things. So sweet they just want to help, they just don't understand this disease. That is one reason we need more public awareness. I even have a niece of my boyfriend, that was diagnosed with Lupus at age 10, and the parents don't believe in prescriptions and are giving her immune boosters. We argued about it for a long time, and I send them information. I am afraid for the little girl.
 
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Wisteria2002 responded:
Great response!
 
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geneva45 replied to squirmy1963's response:
Hi Squirmy, I was diagnoised with Lupus 3 years ago and was having so much pain in all my joints. My Dr. wanted to start me on steroids right away. I refused as I was afraid of the side effects that some die from. I go every 6 months and my numbers are coming down everytime. I have no pain in my joints and all I do is immune booster vitamins and watch my diet and keep a good attitude. I know not everyone is the same but I hate to see where someone is taking all those steroids and still in pain.
 
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Lupylisa44 replied to geneva45's response:
Hi Geneva and Welcome!

I am glad you are able to control your lupus with diet. But, immune boosting vitamins are normally a big no no with lupus. We need to stay away from anything that boosts the immune system. When they treat lupus, they try to supress the immune system so taking immune boosters is counter productive.

I went for years refusing to take steroids but when my lupus attacked my kidneys, I had no choice but to take them. The side effects of steroids are terrible. I have already had cataract surgery and am osteopenic (pre osteoporisis) but I don't know that I have ever heard of anyone dying from taking steroids.

But if whatever you are doing works for you, more power to yaou! Just as a rule immune boosters are not the way to go for lupus patients

Lupylisa


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