FMS & Lupus Online Support Group

: Hi ihave just been diagnosed with SLE and 6 months a go with sjorgens syndrome. All that has happened from the day i was diagnosed with lupus was to get some factor 50 sunscreen, take the predisonole and plaquenil. No information on what to do etc, jsut keep out of the sun!

I have never had such a vague response, just said they would try to get me into remission with these treatments and will see me again in August 2012.

Is this the usual thing to expect with lupus care?

I think that all doctors are pretty general like that and its scary. I mean I came home and read everything I could about lupus and things that trigger our flares. Its lots of things from the foods we eat, amount of sleep we get, to the changes in the weather. So much of this is a guessing game but once you learn more about both diseases you start to put together what you did to create the flares. Then again sometimes there are just times when you are sick for no real reason. I am around if you have more questions. I also have Sjogrens.

Hi thanks for your reply, it gives some comfort, its early days yet i know so will like you say live and learn about it, this site is a great help, many thanks again.

keep the optimistic point of view ongoing... good support system is helpful whether it is online or directly from our friends and family...

The support system is the most important. My family is great but they don't understand in the same way that my groupies do. We each lived it. Its like mmack said and we all have a story and a road that we traveled. So that is an amazing gift when you share it with others.

Thanks for replying,it is good to know there are others out there, my family just dont understand what all the fuss is about! Maybe one day they will understand me and what the SLE and Sjorgrens does to ones body, thanks again.