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Regular Member

Date Joined Apr 2011
Total Posts : 56
   Posted 4/18/2011 2:04 PM (GMT -6)   
please delete

Post Edited (tfofd) : 6/10/2011 6:47:05 AM (GMT-6)

Regular Member

Date Joined Oct 2003
Total Posts : 495
   Posted 4/18/2011 6:18 PM (GMT -6)   
Sorry, tfofd, that you are frustrated....It get's like that. Keep your chin up even if you are lying on the floor. To me sometimes the doctors don't even know how to handle our issues. My issues change faster then I can handle them.

Best always
Enjoy what you can today and leave the rest for another day.

Regular Member

Date Joined May 2009
Total Posts : 27
   Posted 4/19/2011 9:53 AM (GMT -6)   
I'm sorry you've had such a difficult time. I was started on plaquenil many years
ago although at the time I had only mild symptoms. It did not prevent the
flare ups I eventually had (and still do) but my Dr. wants me on it anyway as
there is evidence it helps reduce severity of flares. I do not believe it completely
prevents or cures the symptoms of flare ups. I consider it a pretty standard
medication given to most SLE patients and for me, in combination with an
immunosuppresent to hopefully control and manage lupus.

Veteran Member

Date Joined Dec 2007
Total Posts : 2113
   Posted 4/19/2011 6:48 PM (GMT -6)   
My rhuematologist never treats anyone during a first appoointment. She runs her own tests and has you come back in two weeks. That is when she will write scripts.

Veteran Member

Date Joined May 2005
Total Posts : 7725
   Posted 4/19/2011 7:15 PM (GMT -6)   
Plaquenil only rarely affects the eyes. If it's prescribed, the patient is advised to have a particular eye test every year, or more often if they feel there is some reason for increased risk (like your sister). By having the eyes checked often, it is very easy to determine if you are having this relatively rare response, and they eyes will go back to normal as plaquenil usage is suspended.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

panther fern
Regular Member

Date Joined Feb 2011
Total Posts : 163
   Posted 4/20/2011 9:35 AM (GMT -6)   
Get a new Rheumatologist. not all drs. are right for all patients. I hope you find answers.... I have SLE and my lungs often don't feel like they are working right i have a great pulmonary doctor and they have been checked.. he said there are a lot of reasons why lungs get even fatigued so to speak with AI. When your whole body is fighting it self. I do take an inhaler symbicort two times a day.. but i do not have asthma. You are probably really worn down. when my lungs and everything plummets i usually get a shot of steriod or go on a mild steriod boost, but now i do have some mild blood sugar issues so i am trying desperately not to take steriods. though when i had my infusion yesterday, i did get a boost of some steriod. Auto immune a double edge sword.. I figure we that have it must just be really tough people and are so blessed to be challenged with something so incredible. Immunology always interested me.... but i never really wanted to deal with it personally. I wouldn't wish this on any one...

Best of luck... may tomorrow be filled with Hope for better health.

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