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Discussion Starter · #1 ·
What were your titre levels when you were diagnosed?
 

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Dear Doris

They will vary from person to person and some people have no blood work despite them very obviously having lupus. Often a biopsy even when there aren't any skin problems can show lupus. I was diagnosed by skin biopsy before there even was the ANA test as it is nowadays and the anti-Ro antibodies had only just been identified and knowledge of them hadn't filtered down the medical community in general.

Since I was diagnosed by skin probs and biopsy my levels don't really matter but the ANA has never been more than 1:320 and I do have the anti Ro antibodies. They are one part of the ENA panel and I think from earlier posts that you are referring to anti-Ro, since you have tested positive for them They are fairly common in lupus and count towards an SLE diagnosis. They are diagnostic of Sjogren's and many of us have a degree of overlap, Lupus and Sjogren's, depending what symptoms these antibodies cause in the individual.

As far as I know, the titre of anti-Ro doesn't matter much - positive is enough to count for diagnosis. The other association of anti-Ro is with a particular sort of skin lupus called subacute cutaneous , which is what I have, and high photosensitivity.

I can't think why you aren't getting diagnosed and more important treated for lupus as I seem to remember you do have skin lupus. You certainly have significant antibodies with ANA 1:640 ( changes in levels don't matter) and the anti Ro antibodies. I do hope you will get some help soon.

I will get my Clare.T (TM) Tazer charged up and ZAP this doc for you ;)

Hugs
Clare
 

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Discussion Starter · #4 ·
Thanks Clare,
I can't understand why i have'nt been given a diagnosis either, & i did know that the titre's don't matter much either.
I just want to know what's wrong & to give it a name, & then i might get some meds to help me feel better, Nobody but me knows how much this is affecting me...........
Insane comes to mind, i really feel nuts at times, i need ideas on how to tackle my Dr, who i don't see eye to eye with & i don't fell comfortable with most of the time. I've looked into finding a new Dr nobody is taking on new patients, so that a work in progress.
Thanks again, any ideas would be very welcome.
 

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HIya.. my ANA titre was 1:640 and RNP positive......the rest was negative, you would think that and my symptoms would give immediate MCTD diagnosis, but had to wait five months and being rushed to hospital for final decision on diagnosis..... ah well, quicker than most!
Claire X
 

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Doris,

My ANA was 1:1280 the first time it was tested, but the rest of my labs were normal, except a positive smooth muscle antibody test. I was experiencing joint pain, facial rash, sensitivity to the sun, muscle pain, fatigue and fevers. It still took more than a year to get a diagnosis because my first rheumy thought it was all in my head.

Keep trying to find a new doctor. There's no guarantee the next one will be any better, but you KNOW you don't care for the current one.

Good luck!

Terri
 

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Discussion Starter · #7 ·
Thanks everyone,
I'm still trying to find out the titre level on my last test results, my family Dr is on holiday til the beginning of sept. Phoning the Rhuemie again tomorrow.
 
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