Are my symptoms and results related to lupus? - LUPUS UK

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Are my symptoms and results related to lupus?

7 Replies

Hi all,

just wonder if you could help?

My partner struggles with few symptoms for years and we wonder if they can be related to lupus.

The worst symptoms:

- fatigue

- joint pains and swellings (ankles and knees)

- diagnosis of joints hyper mobility

- urinary symptoms (kidney pains, small volumes of urine, diagnosed gout)

- GI symptoms (ongoing diarrhoea, winds, belly swelling, ?coeliac disease)

The additional symptoms:

- high temperature (37.5C-38C)

- low mood

- headaches

- cold feet and hands

Tests my partner was able to have done were only:

- Anti Nuclear Antibody: Positive

- Anti Nuclear Antibody Titre 1/160 Homogenous

but:

Anti ds DNA - 3.7, normal range: 0-15

Any ideas?

Many thanks.

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7 Replies
Chris21 profile image
Chris21

Symptoms could relate to lots of conditions including joint hyper mobility syndrome. Best thing is to ask gp to do further tests, if not under rheumatology you could ask to be referred as hyper mobility also comes under them. Hope you find the answers you're looking for.

I agree it could be any number of autoimmune conditions including Lupus. Are his ESR and CRP raised/ high? If so this makes it more likely that he has an inflammatory autoimmune disease but wouldn't tell you which one. That has to be decided by a rheumatogist. Has he been referred to onr yet?

Hi,

thanks for your answers. My partner has been referred to a rheumatologist who diagnosed my partner with hyper mobility and that was it. His ESR was 16 (normal range 3-15), CRP hasn't been rested ever. Despite the severity of some of the symptoms, a GP seems not to be interested in sending my partner to further tests. We probably will have to consider private clinic to do the tests. Found one in London specialising in Lupus, but maybe, as you suggested, a rheumatologist would be a better option in the first instance...

Purpletop profile image
Purpletop

If your partner has been tested for autoantibodies (which he has been), it means the doctors suspect an autoimmune disease already. The plethora of symptoms, together with the autoantibodies results do suggest lupus but a rheumatologist is best placed to diagnose and start treatment. Once treatment is commenced, most of the symptoms will improve, so getting treatment as soon as possible is key to preventing further damage due to inflammation.

HI, just wonder what kind of treatment. My partner was prescribed very strong painkillers only, and, when discussing gout, was advised to look on internet for a self treatment. I read many stories on this forum already and can see few people experience similar problem with an access to diagnostic tests and treatment and are not taken seriously by a GP as it happened to my partner :(

Purpletop profile image
Purpletop in reply to

The usual treatment starts with steroids and/or hydroxychloroquine, then progresses to immunosuppressives if the former do not dampen the immune system sufficiently. But I don't understand why they haven't diagnosed your partner with an autoimmune disease given the blood results and symptoms - what was the explanation?

Painkillers only work so far - your partner needs medication that addresses the rest of the symptoms.

As for gout - why hasn't your partner been put on medication specific for gout? Recent research has shown that elevated levels of uric acid in the blood are a precursor to kidney issues later, although not many gps seem to have gotten up to speed with this and are reluctant to prescribe unless the patient insists.

onamission profile image
onamission

I have all the symptoms you describe plus like today I have been out in the garden hanging washing on the line the sun is out I have now purple marks all over my arms and face my joins are so painful like flue and I feel so tired. I was tested for Lupus and the rheumatologist told me all the symptoms were because I took steroids for my COPD as I was about to tell him symptoms started before I took steroids he discharged me.

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