I am very worried about my friend, she is just being diagnosed with lupus and she is very ill -can you help?

She has acute pain in her kidneys and joints and is unable to look after herself so her mum has moved in to look after her. She's been in hospital twice in the last week and the doctors don't know how to treat her. She reacted badly to painkillers. As far as I know she hasn't seen a Rheumatologist yet! I want to help her by getting advice for her.

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  • We are Facebook friends. She writes "So things have gone a bit strange my end! I was rushed into hospital with a suspected kidney infection end of last week (was on my own and had to go in an ambulance - slipping in and out of conciousness and all kind of strange symptoms...was really scary!) they couldn't work out what was wrong with me and I was in so much pain, wasn't sure if it was infection, inflamation, lupus, renal colic or combination of all... I was also having lung and heart problems, fainting, disorientation, all kinds of weird stuff, but they couldn't find any bacteria and I didn't have a fever etc... was very odd. they tried me on a bunch of meds (anti-inflamitry and antibiotics etc) but I had a massive reaction to it all... my joints felt like they we're exploding, I couldn't breath, I was passing out and having muscle seizures... all strange stuff I've never had before. I am waiting to have a body scan to check my kidney's and liver etc, I had a chest x-ray and the doctor says it looks clear but I might have mild pleurisy. And my rehumatology appointment in september so I'm hoping to get some answers... also have a urology appointment coming up.

  • Hi Dryad so sorry to hear about your friend. I would have thought that whilst she was in hospital her appt with the rheumatologist could have been brought forward. When I was admitted to hospital with a plethora of symptons (some similiar to your friend ) even the consultant admitted she did not know what was wrong with me . I had antibiotics pain killers etc but nothing helped. You don't mention if your friend is on steroids, I saw the rheumy who put me on steroids and within six hours everything began to calm down, what a relief I felt after being almost bedridden for 7 wks. Hopefully her appt can be brought forward your friend will n

  • Hi Dryad, i'm sorry your friend is having so many problems, most of which I cannot say I have experienced. Like beckside, just before my diagnosis I was literally bed bound and could not feed or get a drink myself but my GP put me on steroids - I have been on them ever since (6-7 years) but have not looked back - dare I say they have been my saviour! Surely your friends GP should be writing to the rheumatologist asking for her appointment to be brought forward in light of her current problems? Take care, Angela xx

  • Thanks for your help, she is currently untreated, and has not seen a Rheumy yet even though she's been in hospital twice. She will have to give up her flat soon and move back into her parent's place in Scotland (she currently lives in Western-super-mare) and has an appointment with a rheumy on 14th Sept at Bristol Royal. She had a massive reaction to the drugs they tried her on in hospital... she says:

    "I seemed to have a big allergic reaction to co-codamol, but also a possible allergic to reaction to trimethoprim (an antibiotic) and mefenamic acid (an anti-inflammatry) and I had a strange reaction to an anti-histamine tablet... but the strange thing is I've taken all of the above fairly recently before with no trouble, so odd that I can't tolerate them now... does lupus flare ups make you more allergic to things?! I read that having allergic reactions to things can trigger lupus flare ups, maybe it works both ways?... "

    I've encouraged her to join this forum but she's too poorly at the moment to get do anything new like that, hence me asking for her.

    Thanks. I might ask another question for her.

  • Hi Dryad,

    Im sorry to hear your friend is in hospital but would think she is in the best place they will keep a close eye on her, and she has round the clock care so while its hard for you its the best possible answer for her, she can rest and relax while her body heals.

    Thre is no cure for lupus so we need to make use of all help there is . Hope this helps.

    Judith.

  • Thanks Judith. She's at home now, but I've put her in touch with the lupus nurse so hopefully she'll start getting some answers soon. xx

  • iM ,

    SO PLEASED THINGS TURNED OUT WELL FOR HER,THE LUPUS NURSE IS A GOOD IDEA AND I HOPE SHE CONTINUES TO WELL

    JUDITH CSF.

  • DRYAD,I SENT A MESSAGE A FEW MINUTES AGO IN REPLY TO YOURSBUT DIDNT PUT YOUR NAME TO IT. ,

    IM GLAD SHES HOME AGAIN , THE LUPUS NURSE IS A GOOD THING AND CAN ONLYHELP GIVE HER MY BEST.

    JUDITH CSF.

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