Recently diagnosed SLE and sjorgrens sydrome!! Help

I dont know much about sle, my doctor said keep out of the sun and take plaquenil and steroids, and come back in 3 months time!! That was it, i feel left out on a limb, have a few flare ups which i didnt understand, though i do now. It has also affected my kidneys. The worst is the fatigue i used to be so full of life and energy but now my energy has gone, is it always like this?It seems the docs arent that bothered really give you a prescription then byeee for some time. I like this site as we are all in the same boat, i thought i was the only one, of course thats daft, but i do feel cut of and in a place where i dont really understand. Is this just me, my hubby seems to think im daft! Why are you so tired says he!! I try to explain but like talking to a brick wall. Well thats my moans over for now, thank you all.

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11 replies

    mstr
    mstr

    Hi there, so sorry that you feel out on a limb and hope that this site helps you loads. You asked about energy levels and I completely understand how you feel, though I have been on placquenil since September now and it has helped loads with this (400 mg daily). Before that I, like you, found the fatigue part was debilitating. Can you get your hubby to read the information off the Lupus UK site or watch their dvd? This may help him to understand the condition more.
    Sending you a hug. M

    nannygrumps
    nannygrumps

    Hi thanks for the hug! Lovely, i think my hubby is burying his head in the sand, he read the info as i joined lupus uk and he said it s serious then! And in the next breath it was what are we having for tea!!! still that is him hes not the best in understanding health issues he think sif you can walk talk and do thingas then thats ok. This site is brilliant i will have to so some more looking and learning, I am on 400mg plaquenil but the doc reduced it to 200mg and lo and behold it all flared up worse than before!.
    Thank you again it is reassuring that there are other people out there who understand. best wishes and thank you Jude

    mstr
    mstr

    Hi Jude, you are welcome. I know what you mean re burying ones head in the sand ..... Some times I think this is because it is difficult for a partner to deal with the fact that a loved one does have a serious illness. I know my husband was frustrated because he couldn't solve the situation by 'taking it away from me'.

    I tried few weeks ago to cut down to 200 mg (on advice of rheumy at previous visit). This did not work as aches/pains/fatigue returned, so I continued with my 400 mg and this has improved. Maybe worth sounding out your dosage with GP again if this caused a flare up.

    Take care M

    nannygrumps
    nannygrumps

    Hi many thanks i have the hospital next week (3 visits!!) so will folow this through,have to have kidney tests done also my eyes as they think i have macral degeneration! Still not to worry, thanks again best wishes jude.

    nanny4
    nanny4

    Hi jude,hope all goes ok at your hospital visits.
    I came to lupus UK forum to find info on behalf of my 26 year old daughter who was dxd with sle a few months ago.She has many probs,asthma ,anaphalaxis due to allergies heart disordet scarring of the kidneys and heart balves also inflammatipn of the brain and spinal cord,that is just to name a few.
    She is still not under control as the drs are convinced they are missing something.
    She now has pneumonia,poor thing,but even with all that rubbish she has to go through she still manages to work full time in a stressful job she also hsd twin 3 year olds.
    She has not been on here partly because she is so busy with het life in genetsl but I also think it is because she doesn't really want to know any of the other bad stuff that could happen to her.
    I do not have lupus fortunately for me but I do feel you need to know ad much about lupus ad you can , to enable you to help yourself.
    Dr's I feel told my daughter very little ,which in turn have made her lupus even worse no one even told her to stay out of the sun that is what caused her recent flare to worsen.
    This site is great, my daughters partner is not much help to her I think it is because she is always really active no matter what,and apart from the skin she looks fine!!!
    I hope you get on ok at your hospital appointments,
    Take care, Sandy.

    nanny4
    nanny4

    Sorry about all the spelling errors, should have read it back before posting it, mobile phones for you! Or is it just me? Ha ha.

    nannygrumps
    nannygrumps

    Thank you Sandy, and i thought i had prob lems! I was told to stay out of the sun an use factor 50 which i have, i reently had 2 weeks in turkey and stayed in the shade and was fine, i expected my face to erupt but it didnt oh and wore a wide brim hat. I feel the doctors arent really doing enought for lupus sufferers, mine just precribed treatment and then back in 3 months, months etc, no reasons explanations etc. That is where this site is so good, at least can talk to other people who know or have lupus and its suprising what you learn. I wish your daughter all the luck in the world, she deserves it, all credit to her working and having the twins, so so busy she must be. take care Jude

    Nouska
    Nouska

    Understanding lupus for 'others' (those without lupus) can be problematic. True empathy, for the lupus patient, is not possible for those without lupus; although sympathy can be had through awareness.
    Perhaps you and your hubby can watch the LupusUK informational videos together? They are clear and concise and supply comprehensive information regarding the disorder/disease for patients and for patient's loved ones.
    The more informed you are the more understanding you will have the more comfort and self confidence you will gain. Be well.

    nannygrumps
    nannygrumps

    Many thanks for that i will get him to sit down with ma and watch and learn.

    nanny4
    nanny4

    I am going to get the lupus dvd I will give it to my daughter will mske her better informed,then i will have a watch when she is done with it.
    Good luck again ,Sandy

    river
    river

    If anyone is interested, having taken steroids which were not successful, in addition to Naprosyn I have been on Placquenil for three months and have been so much better, less aches and pains, not so tired, and feeling quite well for most of the day, sleeping better, just hope it continues. Recently I was bitten by an insect and had an extreme reaction, my leg became very infected and I needed intravenous antibiotics, wondered if this reaction was exacerbated by SLE. Like others, I was sent out with the diagnosis, a little info and see you in three months, eighteen months on finally getting to grips with SLE.

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