Anyone been diagnosed by a dermatologist due to negative blood tests?

[Comeonpeeps]

Anyone?

Thanks

[Sonny1964]

Hi, I had SLE diagnosed by a skin biopsy after being referred to a dermatologist by my rheumatologist.

I had a butterfly rash and various symptoms- joint pain , fatigue etc but negative antibodies. My complement blood levels were always really low .

I now see the rheumatologist 2 or 3 times a year. I take hydroxy 400mgs azathioprine 150 and depomedrone injections every 3 months. He is happy to say I have antibody negative lupus (SLE)

Hope this helps you.

[Comeonpeeps in reply to Sonny1964]

Hi Sonny, thanks for the reply.

I have all the symptoms for lupus but all tests negative. Rhuematologist says it can't be lupus as I only developed sun sensitivity last summer (had a lot of symtoms for years but some only developed this year). But she's referred me to a dermatologist for my rashes.

Which diagnosed you?

[Sonny1964 in reply to Comeonpeeps]

It is a pain to go through, this whole diagnosis business .

I have other auto immune conditions so my Gp and a consultant heptologist,( I have AIH ), referred me to a rheumatologist , as they were both sure I also had lupus.

The rheumatologist was not convinced at first but as soon as the skin biopsy came back positive, he was happy to diagnose SLE and to start treatment .

The dermatologist was great , I had the biopsy within a couple of weeks of seeing her. All painless. I was sent results via a letter which confirmed SLE

[Comeonpeeps]

Oh OK. Sorry about your diagnosis.

The thing is I only have evidence of rashes on photos. They never stay. So surely a biopsy would be extremely difficult?

[Sonny1964 in reply to Comeonpeeps]

They took a biopsy from a spot on under side of my arm, where I never have a rash. I always have rash on my face

They look for some kinds of bands within biopsy , this is positive for lupus.

Not very technically put but that's what I was told.

Hopefully a biopsy will give you an answer one way or another

[Comeonpeeps]

Oh really? Thank you so much for your replies. Not many people know of my suffering as I don't like to appear like a hypochondriac! And with no diagnosis it seems pointless. It's great to chat, thank you

[Sonny1964 in reply to Comeonpeeps]

Good luck with it all, it's tough being a lupie 🙂

[Comeonpeeps in reply to Sonny1964]

Thank you Sonny. Would you mind me asking if I have any further comments/questions?

[Sonny1964 in reply to Comeonpeeps]

No bother let me know how it goes .

[Comeonpeeps in reply to Sonny1964]

Thank you. Yes I will. Only saw the rheumy today so could be a while.

[AnnNY]

I had a positive skin test for lupus (although in the 80s when I had it it was considered negative because the non sun exposed skin was positive, not the sun exposed). I was told that my test was positive a few years ago but a top immunologist. Now I'm at another center for rheumatology, and my resident told me that they don't care about skin tests anymore. Yikes. I've also been ANA negative for years after plaquenil kicked in for me in the 80s, but recently I had a low ANA result. My young rheumy told me it didn't mean I had lupus, that it could be because I'm old and fat. Last time I went to the rheumatologist she had me down and undifferentiated connective tissue disease. But I'm being treated, although I'd like to go back on Methotrexate or something that would really get me into remission that might stick now that I'm elderly (63). Maybe more information than you were looking for. Apparently there is something called "lupus burnout" where it goes away when you are past menopause.

[Penelope-Mary in reply to AnnNY]

Hi AnnNY, I think too that as you put it 'lupus burnout' occurs, I read it somewhere. Recently I was having a major flare when I was scheduled for an appointment with the rheumatologist. He could see I was unwell, I had the usual blood tests and did say to him I'm too old ( well too far into the initial diagnosis 14 years ago really but also post menopause) to have positive results. He rang the following day and said..' As you'd expect they are relatively normal ( positive for myosotis) but that doesn't mean much ' and upped the prednisolone for the duration of the flare. So that was reassuring. I hope that anecdote helps. 🤗

[Paul_Howard Partner LUPUS UK]

I'm sorry to hear that you are experiencing difficulty getting a diagnosis. I hope that seeing a dermatologist helps you along the path. Please keep us updated about how it goes.

If you would like any more information about lupus and how it is diagnosed we have a free pack that you can request or download at lupusuk.org.uk/contact-us/

[Cindylynn]

I was initially diagnosed by a dermatologist... In 2005. Although he sent results to my primary care dr, it was a year or so later when I went back about more spots that he declared to me 'It's the lupus!' Turns out that, at the time, my dr felt other issues were more of a concern - I ended up getting a new dr who referred me to a rheumatologist who basically said what my first primary care dr had... ThAt was in 2008. This year I was referred back to that same rheumy who has now put me on azathioprine and in the last month, plaquenil - so in my case the bloodwork supported the diagnosis and the spots too, so I had the diagnosis but treatment was to keep an eye and manage symptoms as they came along.

[btvoicu]

Well I have had about 6 skin biopsies and they are not convinced calling it an autoimmune issue this is from my rheumatologist ----dermatologist is convinced actually two of them are even though I am now ana negative ( initially i had a high ana that sent me to er and they said i should be tested for lupus because of the way my skin looked, my titer and joint pain fatigue etc... as soon as they gave me prednisone and rheumi started me on plaquenil it was like nothIng ever happened and negative for the other tests. Currently the biopsies have been deemed sweets syndrome and one of the associated conditions is Lupus so jury is still out but taking meds and trying to get a use to this it has been 4 years since the original episode that has sent me down this path and my skin still reacts more mild then it use to be I had bullseye patches under my arms they tested me for lyme all negative they also biopsied those spots one on my face ,neck,back and underarms this is when sweets syndrome was diagnosed

[qwerttyuiop]

I was diagnosed by skin biopsy 16years ago after 20years of seeing doctors to no avail, hope you get sorted soon x

[Comeonpeeps]

Thanks for all the replies sorry for the delay had other stuff going on.