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Dolphin

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 #16 
Hi Doritos my mom bought The Lupus Encylopedia book on amazon by Dr. Thomas. It waz rlly helpful to me and talks about all the different meds I think also pain meds and labs. I'm a complex case and I take it to my non Rheums when I have probs
taffylinden

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 #17 
Doritos, SLE patients have been warned NOT to take chaga. While none of the claims that it works as a magical cure for cancer, diabetes, heart disease, etc. have been proven true, if it DOES boost the immune system, that's NOT good for lupus patients. WebMD has a warning to that effect in its section on chaga. 

There's also a warning about natural medicines from the message boards moderator. We tend to be pretty wary of them here, as they typically don't have the clinical trials and scientific evidence to back them up.

If the naproxen is working for you, then I'd keep taking it, since the doctor prescribed it. 
Dorito

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 #18 
Taffy, I have seen sources that give the same warning to SLE and DLE patients, that it will never help in any case, end of story. However, other sources I've come across claim that in SOME cases chaga can actually be beneficial to those suffering with lupus.

On other message boards similar to this one, and in a book I have been reading recently (The Book of Lupus, I think), chaga has been found to actually alleviate pain as well as reduce the amount of flare-ups an SLE patient may have, though other people reported having the opposite effect as far as the flares go. I personally have found the latter to be true for me, but there is a possibility I do not have lupus and what the chaga is alleviating is some other autoimmune illness.

My flares some to be caused by either emotional or physical stressors, the physical ones resulting in more severe flares. Common physical stress for me have been either exposure to extremes such as the sun in the summer or prolonged time in severe cold, as well as sickness. Because of the sickness trigger I've found it beneficial to use immune system boosters (though I've found flares from emotional stress to be worsened since doing so, I'm pretty good at avoiding such stress). Though suppressants were recommended to me at one point, I liked the idea of avoiding the triggers rather than suppressing my immune system completely as my mom and I were worried I'd just be constantly sick rather than on and off.
Robinj

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 #19 
Well, hopefully it is not lupus that you have since, what are doing and/or considering (ie "boosting" immune system and UV therapy) is truly counter productive to lupus patients.
Good luck

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Robinj

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 #20 
"but there is a possibility I do not have lupus and what the chaga is alleviating is some other autoimmune illness."

And by the way, be it lupus or some other autoimmune illness, autoimmune is autoimmune and boosting the immune system is a big no-no...

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Dorito

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 #21 
I've seen sources that state otherwise on both UV therapy and boosting the immune system, and my rheumy does say it is autoimmune. It seems to be very difficult to definitively say what will and will not help each individual patient and each individual auto-immune disorder. I've seen a lot of studies covering different possible treatments or triggers where the percentages are laid out something like 40% stay the same 40% flare and 20% have symptoms alleviated. Usually the good one is very low so I put it like that. But thank you!
Robinj

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 #22 
You are getting info from some veteran folks here, but best of luck.
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Cakelady

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 #23 
It doesn't matter if it's the sun or just the heat either way I end up throwing up.
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taffylinden

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 #24 

Dorito, it depends on which sites you're using. Pro-chaga sites, herbal medicine sites, those types of places will tell you chaga is great. What you need to look for is whether CLINICAL STUDIES have been conducted. The internet is full of sites making all kinds of claims that are not substantiated. 

Since your doc says it's autoimmune, then you need to know this: with an AI disease, our immune systems are out of whack. They're not deficient or lazy, so they don't need activating. They're like a very nervous guy with a gun in a hall of mirrors: he keeps shooting at "bad guys" who are really himself. Giving him more guns or more bullets is only going to make things worse. Because he spends all his time shooting at his own reflection, he DOESN'T shoot the REAL criminals who are all around him. That's why people with compromised immune systems like SLE patients get sick more frequently. 

UVA causes lupus flares. Go to the LFA main webpage and do a search. Go to webMD. Go to the Johns Hopkins lupus site. At the very least, ask the doc who said you have an autoimmune disorder. You shouldn't take any herbal or natural medication without checking with your doc anyway.

Please understand that we're concerned. If you DO have lupus, then as Robin said, you're inadvertently doing two of the worst things you can do. So please, check with your doc.

Robinj

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 #25 
Sorry, but I am done trying to help this person.....
smiley: Thgahhh - keystrokes: :gaah

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Dorito

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 #26 
Thank you for all the help and advice, Taffy.

Where I was getting my information from was multiple different sources, the book I've especially been referring to for treatment plans when dealing with autoimmune disorder was written by a doctor in the states who is supposed to be one of the best. I have also talked to my family doctor and rheumy. Based on what I've been told and what I have read, it seems like different people have different reactions to treatment like chaga or UV therapy. I even saw some lupus forums where people were discussing success stories with both. My doctor said there aren't many studies to reference with lupus because the symptoms and what helps or doesn't varies so much from person to person.
But I'm starting to feel a bit uncomfortable sharing here, so I'll just end it with thank you..
upstater

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 #27 
Taffy - Can we give my nervous guy some Xanax so he stops shooting me? lol

I think folks are just trying to make sure you base your decisions based on reputable sites. I know my rheumatologist and 2 dermatologists told me to keep out of/or take protective measures in the sun. My purse is like the drugstore aisle of sun protection. My dermatologist also said "you may not do well in the heat". And guess what - I already know he is right. Because I already have not done well in the heat last summer. My feet and hands swell. And that never used to happen. 

You are young, and no one wants to see you do yourself harm, inadvertently.
clgrover

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 #28 
In regard to pain medication: my wife takes Tramadol 50 mg (WITHOUT added Acetaminophen) three times daily. (She has needed more in the past.) She then takes Acetaminophen as needed. She is also on Plaquenil and Lyrica. Wellbutrin is also helpful. Somewhere along the line, possibly due to medication, her stomach acid got out of control, so she also uses Omeprazole. It did take a while to get to a Lupus diagnosis and to get to this balance of medications. Always: everyone is different. Also, things change from time to time (years or hours).
shutterbug

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 #29 
Dorito- was the book you were reading referring to UVA1 instead of just UV treatments? UVA1 actually is useful in the treatment of lupus.
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