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Marika
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Discussion Starter #1
A friend phoned to ask a bout treatment fpr Luüus as her 'brothers friends daughter' in Spain has it and it has affected her liver .....
so my 'friend' is one of those who goggles a word and what comes out is law ect. (pse. note the slight sarcasm here ) I am sure you have all been plagued with these people (God I'm in a bad mood) who all have the super dooper cure for you........
'But it says it cures Lupus!!!!! and they quote Drs. too!!!!!!

Well I said I would post it and ask if anyone has tried it....if u feel like replying pse do.
Sorry about my filthy mood...
Have a nice day,,,,
Marika:mad::mad:


HAHAHA sorry forgot to say what it is......PYCNOGENOL....:hehe::hehe:
 

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Hmmm...I went to the site...

Sounds like snake oil...can cure almost anything from Attention Defecit Disorder to Wrinkles - didn't see it curing any real diseases (although I know ADD is real and is treated with meds, it doesnt impact your bodily functions).

Did find something that as a Lupie make me worried..

Pycnogenol® enhances the activity of the immune system
Pycnogenol® shows beneficial effects in case of lupus erythematosus

These are just a few of the broad statements that offer no supporting documentation. This is not controlled by the FDA, there are no reports on drug interactions except for the broad use of the term NSAID's.

I did post the following questions to the "experts"

Have you tested drug interactions between your product and other medications (not NSAID's) used in treating rhumotalogical diseases?

What are the beneficial effects on LUPUS SLE?

Do you have any plans to pass your product by the FDA to ensure its safety in the use of treating rhumatological illnesses?

I can't wait to see (1) If they answer (2) how long it will take (3) what they have to say.

I did see reference to studies done overseas (and to be fair) a few in the US, but they did not provide any real data on the studies and results...and no discussion of negative reactions...and as we lupies know...meds affect everyone differently.

I am very curios to see what others have to say about this one.

I will let you all know if they respond to my questions.

Stephanie
 

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Dr. Dean Edell on the radio says never to believe in anything that claims to help so many things. They may have done their research but was it tested by others to confirm the results? Also were the tests funded by them and done in the double blind fashion? Supplements are not required to undergo the rigorous testing the medications undergo. Even then we don't know what the effects are on the general population and some have to be recalled.

I personally would stay away from it.

Take care,
Lazylegs
 

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I am not sure what the difference is between autoimmune hepatitis and lupus hepatitis probably not much in terms of treatment.

You can tell them that according to reliable sources people with AIH who aren't treated promptly with the correct medications - Prednisone and Azathioprin - will probably be dead within ten years.

At the best these sort of supplements will do no harm. I can only suppose that the people who are taken in by these ads have no idea of the potential seriousness of autoimmune diseases. It's so odd that they are willing to believe the claims of people who stand to make a profit from their product by blatantly exaggerated claims with no scientific evidence for treating life threatening illness, when if they were buying a car, domestic equipment or other major consumer items they would take the manufacturer's claims with a pinch of salt and do their research first.

Well I suppose they are doing some research in asking you and maybe they have no idea of the resources available on the internet or don't have access. It's easy to forget what the situation is like when you are suddenly faced for the first time with a major health problem and have no experience of this area.


Cheers
Clare
 
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