needing some advice

[Evegray]

hi don’t no if I have lupus? getting bloods done Tuesday ,, had a rash on my face few times last year painful joints neck stiffness shoulders and arm knees stiffness have osteoarthritis as well just hope I get answers soon my physiotherapists saw photo of my rash said it looks like lupus time I get the bloods done rash is away here hoping bye the way in my 60 is this to old to get this condition ?

[Lizard28]

You are not too old to get lupus, I was around 60 when my symptoms started but it’s taken about 10 years to get diagnosed as I always had negative blood tests. Only had a RF positive. I got my rash biopsied quickly the last time I had it, was sent to dermotologist urgently and it showed lupus. She even told me it was a lupus rash before the test results came back and asked I would allow the hospital photographer to photograph all my rash she was that sure.

[Evegray in reply to Lizard28]

Thanks for the information hopefully find out soon as not being feeling great for a while ,,yes few people that have saw my face nurses I no said definitely looks like a lupus rash ,,only lasts about 5- or 6 days is that normal ? was on holiday few weeks ago and eye lids were swollen thanks for the reply much appreciated x

[Lizard28 in reply to Evegray]

Everyone is so different with lupus, my rash was mostly on my back, quite unsightly, my arms shoulders scalp and face. The redness on my face can come and go , I’ve never had a full malar rash on my face, but I get it on each side on my cheeks. It’s a strange one.

[Evegray in reply to Lizard28]

Thanks for the reply ,,mine's is on both sides of cheeks and nose ..was confused as first time it happened my grandkids had slap cheek and thought I had caught it from them ,,,then it happened another twice so who nose hopefully find out soon thanks again x

[Evegray in reply to Lizard28]

Have heard it’s hard to get a positive blood test result is there a reason for this ?as so many people saying it x

[Lizard28 in reply to Evegray]

I’ve no idea but my Rheumy is a stickler for blood tests, if it doesn’t show you ain’t got it.

[StriatedCaracara in reply to Lizard28]

I'm wondering if there might be an age of onset relationship with blood results.

Maybe if symptoms start later less likely to get the strong positive anti dsDNA bloods.

Also covid has impacted for some, and maybe presentation then is different.

Maybe getting the anti ds DNA is delayed sometimes.

Following negative first result, NHS here refuses to test a second time. ..my only NHS test was four years ago.

[Evegray in reply to StriatedCaracara]

I am getting bloods test done tomorrow so will see what comes back for that ,, I do get the butterfly red face and nose and have quite a lot of the symptoms ..i have coltis 2 and my brother has polymialga and my mum had rheumatoid arthritis so will wait and see ,,thanks so much for taken the time to reply x

[StriatedCaracara in reply to Evegray]

NHS hospitals I believe are reducing case load this way. When more than 4 of 11 symptoms system was used people did not need to have positive bloods.

Also even people diagnosed with lupus diagnosis from the past, may not test positive each time.

Better tests now available but current tests used as research criteria so research requires their use be continued I believe.

Will link to Dr Donald Thomas post on better testing being available.

Personal feeling is it is a mess.

This Lupus Team webpage, at the end gives some interesting percentages. It is peoples lives at stake. Get the feeling the people who decide this, they don't mind some people falling through the gap.

mylupusteam.com/resources/c...

[StriatedCaracara in reply to Evegray]

Dr Donald Thomas, author of The Lupus Encycloepedia did recent video saying need better tests. Here is link to post with link to video.

healthunlocked.com/lupusuk/...

[FandNnan]

No, Evegray, it's not too old unfortunately. However I would think that you may have had lupus for a while and symptoms have not been strong enough to cause you problems. I was diagnosed in my 30s but can trace mild symptoms and related conditions back to when I was much younger.

If you do get a firm diagnosis this forum is a good place for support and information. Best wishes 😊

[Evegray in reply to FandNnan]

Thanks so much yes been having joint pain for a long ,,time moving about my body and a lot of over symptoms that they have never found a answer for ..nerve pain painful neck thigh pain mouth ulcers knee pain hope to get answers soon thank for your reply x

[StriatedCaracara]

I was in my 60s when I got diagnosed with Undifferentiated Connective Tissue Disorder UCTD. ANA strong and positive BUT negative ENA and anti double stranded DNA.

I have the symptoms of Lupus but only had the positive ANA.

Local NHS said therefore it was not systemic autoimmune condition like Lupus or Sjogrens, then in letter that could be UCTD but that was too complicated for them to diagnosis.

Needed to go private for help as so poorly, then treated successfully on hydroxychloroquine and short courses of steroid. Now take mepacrine and hydroxychloroquine and steroid not been needed.

Had symptoms for 10 - 15 years. More then went wrong after covid infection, including getting photosensitive. Look now at my medical record and so much now explained

But my view is ease of diagnosis may depend on blood results. Some also say if older less serious... like they say UCTD has milder symptoms.

Actually science is largely unknown and my symptoms have been quite bad even though it is UCTD.

[catblue1865]

I've got got tests that I'm expecting for raynaurds to see if it is secondary, only symptom she focused on. My Ana low 2:80, said that in their hospital tat result would not be positive, most concerned about my weight loss but said that was not one of the symptoms of uctd.

[catblue1865 in reply to catblue1865]

Has this crap since 2006, nearly 20 years, my last attempt to get diagnosed. Seems like they don't really know anything, not willing to help, she did recognise my pain , 8n joints, bones and muscles, . When I said it had been severely painful one time and agony another felt she did not belive this.

[StriatedCaracara in reply to catblue1865]

All that increased metabolism, fevers, sweats results in weight loss whether it is sero positive lupus or sero negative UCTD.

Not sure they know what telling the truth is. Definately don't think logically.