what if I said no ..?

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shoeless
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 5/14/2011 4:25 PM (GMT -6)   
well,the rhumy put me on plaquenil,jumped up my amtriphaline.She says I dont have lupus,although my tests say positive.I do have alot of symtoms of lupus,and sis has it.I have thyroid disease,along with other crappy conditions.she says I have fibro and cfs.now they have been saying this for 3 years.was on lyrica,gaba,all kinds of special crap....but why are they putting me on plaquenil when she says I dont have lupus..?I wanna go off it if I dont..want my immune system up not lowered.wanna try some natural stuff..get off the amtriphaline too.I am getting a small disability(very small).now if I refuse their treatment will they try to take my little bit I get away?wat do ya think?and why am I on plaq when I dont have lupus?!

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 5/14/2011 6:26 PM (GMT -6)   
I don't have lupus either and I am on plaqunil.
Couple of things-although plaq is an immune modulator it is not an immune suppressent so your immune system won't be lowered that much.
Second thing-nothing helps with the autoimmune fatique, malaise, and fevers more than plaq.
 
I don't know about disability but you have a right to refuse medical treatment.

shoeless
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 5/14/2011 6:52 PM (GMT -6)   
my dentist told me it was an immune suppressant and would not touch my teeth without a note from my doc.

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 675
   Posted 5/14/2011 10:03 PM (GMT -6)   
I am another taking Plaquenil without a firm Lupus diagnosis.  The plaquenil is to address whichever autoimmune/connective tissue disorder I have, (overlapping symptoms)  and it is helping.  It isn't given solely for lupus.  I also have fibro, and the Plaquenil is not given to treat that.   It is not an immune suppressant.  My dentist has no problem with the Plaq.  If you take it you should have your eyes checked by an opthamologist every 6 mos. to a year - the possibility of adverse effects involve the eyes - it is very rare but can happen. 

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 5/14/2011 10:07 PM (GMT -6)   
Your dentist is misinformed, Plaquenil is not an immune suppressant.

I've been taking it over 8 years with plenty of dental work and no issues.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

shoeless
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 5/15/2011 9:29 AM (GMT -6)   
Well.thats weird.Cause the doc gave me a note.weird eh..?I dont know that I see a differenc e yet..and its been 5 months.Still swollen.I dont know what to think.I know that I am positive for lupus,but one doc said I may never have full fledged lupus.may just be ctd and fibro and cfs.

shoeless
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 5/16/2011 11:55 AM (GMT -6)   
thanks so much for your reply.today I am suffering from the worst cold!came on like gangbusters and its like in my head,chest eyes everywhere!yeah,I get it about the plaq...sometimes I think Im normal and can take wat I want as I used to train and s take supplements.I guess I should feel blessed its not worse.yeah 2 docs say yes to lupus,2 docs say no.So I guess well se as the rhumy is saying no.I ll keep on plaq and see wat happens.than ks again for the advice.
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