Lupus help

[L_curtis]

I have a 17 year old daughter who is currently suffering from severe fatigue, low mood aching joints mouth ulcers and headaches she has just been diagnosed with erythema nodosum ( swellings on her legs) and has also come out with red sores on her face it started back in December when she had a high temperature and severe sore throats she was swabbed for strep which was negative so was diagnosed with glandular fever but we have had two blood tests done in the last two weeks and the doctors are saying glandular fever is negative her crp level both times have been 10 but the doctors don't seem to be concerned and think it's a virus that will eventually go! We have to go back next Wednesday for another blood test to check crp level o have asked if they could do further tests to check for lupus but they said they didn't think it was needed. Any suggestions what I should do next as I think with her symptoms lupus is a possibility. Is there anyone else I could take her? Thanks for any advice given

[Atibrat]

Did they test for mononucleosis? I had the same symptoms when I was younger and had mono. I actually thought I might have it again when my symptoms started in 2007 because the fatigue, body aches and mouth sores reminded me of when I was sick with mono.

[L_curtis in reply to Atibrat]

Bloods have come back negative for mono x

[MandaM]

Just to say a CRP level of 10 indicates a miniscule level of infection. I run along always with low levels. A cold could have that sort of level show up in bloods. No worries with your daughter's result there as the doctor said. Hope that reassures you on that point. 😊

[L_curtis in reply to MandaM]

Ok thank you I was under the impression 10 was a cause for concern x

[MandaM in reply to L_curtis]

1 to 10 is normal, 10 - 40 is considered moderate to high levels of inflammation/infection. So I suppose 10 is getting towards a concern. I note the bloods will be redone so at least the doctors being very resposible in rechecking. They can make a decision on how to proceed based on the next set of results. Hope all goes well.

[L_curtis in reply to MandaM]

Thanks xx just feel it's been dragging on for so long and not getting anywhere x

[Paul_Howard Partner LUPUS UK in reply to L_curtis]

Hi L_curtis ,

I think that what MandaM has suggested about seeing what the results are from these tests is a good idea. Typically in lupus, blood tests may show a raised ESR with a normal CRP. Usually if the CRP is very high then this implies that something else is going on, usually an infection.

Do you know whether they have tested her ESR? If you don't have any satisfactory answers following the next set of results it would be best to push for further testing or a referral to a rheumatologist. You can find more information about the blood tests used in diagnosis and monitoring of lupus here - lupusuk.org.uk/wp-content/u...

[L_curtis in reply to Paul_Howard]

I don't know if they have done a ESR test her B12 is low but not concerning low they said. We are waiting for blood cultures to come back to see if there is a bacterial infection going on x

[Hidden in reply to MandaM]

Some labs have a an upper level of 5 for CRP.

CRP is non specific, it can't differentiate between inflamation and infection. It's possible to have an auto immune/ auto inflamatory disease without a rise in CRP or ESR. Symptoms are just as important as blood tests, Dr's should consider the whole clinical picture.

[Hidden]

Hi,

The symptoms you are describing are also suggestive of Behcets syndrome a rare, Vasculitis variant.

Mouth ulcers, erythema nodosum, fatigue, headaches ( usually migraines ) and joint pain are all symptoms. Inflamatory markers such as CRP are often negative.

Here is a link to some info on it

vasculitis.org.uk/about-vas...

If you are in England there are 3 Behcets centres of Excellence ( C of E's ) in Liverpool, London and Birmingham. They are nationally funded so don't cost the GP anything for a referral, your daughter certainly meets the referral criteria. There are also Consultants who have great knowledge of Behcets in places such as Leeds and Cambridge.

If you would like to discuss this further then feel free to e mail me on [e-mail]. I work with Vasculitis UK on their helpline and have Behcets myself. I lurk on here as one of the early rule outs for me was Lupus, to a certain extent all the auto immune rheumatic diseases share common characteristics. In the meantime I would keep a symptom diary and take photos of the ulcers and skin lesions. Whatever the eventual diagnosis is your daughter obviously needs a referral to an appropriately experienced Consultant to work it out.

Best wishes

Lynn

[L_curtis in reply to Hidden]

Thank you very much will have a read xxx

[Hidden in reply to L_curtis]

Low B12 is a very common Behcets finding as well. All low B12 needs treated!