Confused newly diagnosed

Hi have just been told the good news I have Lupus and Sjogrens syndrome after suffering for so long, no-one picked up on it until I got a new Doctor. I don't know how to feel. Its the tiredness,pains and lethargy. I don't know how the medication will help as it takes 8-12 months to kick in they say. It has however helped to know you are out there for support. Wishing you all well.

9 Replies

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  • good luck shanti. keep us informed on your progress and do your homework regarding meds and treatment and dont be afraid to keep the doctors busy

  • Keep positive ,it tokk 16yrs for me to get a diagnoses!its been a living nightmare,you will be greiving as i still am and i get soooooooooooo fed up with the super sore spots all over my body ,the stiffness ,like an old granny ,the fatigue and the general flulike feeling ,i to am awaiting the benefitys of plaquenil to start to help,research holistic ways to heal lupus and if you can use these principlas together with the meds to gain some control on this.keep well ,brave;)

  • Hey Shanti,

    Don't worry, you have diagnosis now so you can start to act and with the right treatment you will feel the difference soon. What is it that you are on? Hydroxychloroquine only? (I'm just guessing based on the time you gave).

  • I know how you feel it took a long time for me to

    Find out I had lupus I was treated for so many different

    Things and nothing was helping.When I found

    Out last October I began medications for the

    Lupus it seems to be helping some but I have

    Good and bad days and when I get really

    Tired and hurt I get depressed about having lupus

    But I keep telling my self I am lucky things could

    Be worse but at least I know it is lupus that makes

    Me have all these promblems I wish you the

    Best and hope all goes well.

  • Thanks to you all that have replied to my help for support, it is nice to make new friends with so much in common.Yes I am on Hydroxychloroquine only and I was interested to read all your thoughts on this it is a huge help.it came as such a shock on one hand but relief on the other as I was thinking it was all in my mind, glad to know I am still sane. lol Thanks

  • Hello Shanti,

    my 15 year old daughter was diagnised with these too in July. haen`t you been offered intravenous steroids? Ellie had them over 3 days & we had 7 wonderfull weeks however she cant hae any more as she only has 1 kidney & they damage immune system even more so now in a catch 22 situ as she`s open to all infections etc over winter! Just awaiting a appt in Newcastle. there is a specialist Sjorgrens ubit at The Freeman. Good luck xxx

  • Hi thanks for getting in touch.Sorry to hear about your daughter she is too young to go through all this, I hope all things go well. Thanks for the info. Good luck xx

  • Well, the fact that you are only on hydroxychloroquine is good. It means that your blood test and physical was not that bad. It is very likely that hydroxychloroquine will stabilise your SLE. I was taking only this drug or years and it was sufficient to make me feel well. Things changed after my daughter was born.

    A word of advice, as long as steroids are not absolutely necessary, don't take them...

  • Thanks a lot for the advice it all helps. Godbless

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