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An update for you all................. Saw rheumy on weds and after several blood tests over several months been diagnosied!!!!!!!!!

After having most of the Lupus symptons 5+ of them now been told that my rheumy is 90% sure that I have SLE, on steriods for 6 weeks then further bloods then follow up appointment. I have a question tho that im sure you can all answer with your knowledge and symptons too - when you are in remission do you still have the symptons but milder??????

Cos mine have never gone and each month that passes It seems that somethingelse appears?????????? IM CONFUSSED??


Your input is very much valued and appreciated and Im very thankful for this site cos it really has helped with each appointment- thank you all very much xx

2 Replies

Hi beckybooboo (love the name by the way), like you I'm newly diagnosed but have been having symptoms for two years. Yes even though on methotrexate and flare ups not so intense I still get them but milder. Yesterday was a busy day and last night I could feel my brain not functioning right (almost hard to concentrate, even following a simple film), today mild flare up in stomach, mild headache. It's like the flare up is occurring but is being suppressed by the meds. Hope this makes sense. Yes and also at other times I can get new symptoms, neck stiffness, tighttening at the bottom of legs - this can last a few days and go and then other symptoms that I have had previously will return, joint pain in hands and all the other host of things that come and go.

It's odd now but I have learnt to grade is mild flare up, mild chest pain, flare up in stomach, head unclear, fatigue and slower thinking. If I don;t do much today it may go by tomorrow or it may hang around a few days. Who knows is what I sometimes think now and I'm learning to go with the uncertainty.

Pleased you got your diagnosis by the way but know it's a mixed bag of emotions. Hope things going well on your meds x


Hiya Beckybooboo, it's great that you finally have a diagnosis! That first step is half the battle @ least now they can start to find meds that will work to control it. In my opinion Lupus is a very person specific and individual beast - we all seem to suffer in similar ways but ultimately it affects each of us differently.

I have been on meds now since my diagnosis in sep 2011 & I still have varying degrees of flares - mine are brought on by stress, tiredness & overdong it. If u can figure out ur own triggers it may help u manage better.

Good luck & welcome to the site - i'm a newbie to it too since last week! So pleased to have my new Loopy friends! We're all in it together :) !

Luv Ellie xXx


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