[sozzy2]

I had an ANA test last winter. The titre was the highest - 5120 - and the type was the antibody associated with lupus. My doctor did all the lupus tests. It all, including sed rate, came back normal. They said it can't be lupus because the sed rate is normal and went into a mindset of explaining away the ANA, not finding out why I feel so awful.

I have dry eyes and dry mouth, I'm growing lumps on my face, I have debilitating pain in the ribcage (they think the cartilage is inflammed) that's growing worse every year for four years now, I'm having trouble keeping my spine flexible. I already have celiac disease, an underactive thyroid, chronic upper respiratory infections and fatigue.

Can anyone point me to information about the association of high titres with Sjogrens? I've read in forums here that sed rates can be normal with inflammatory diseases but I need something my doctor will take seriously as medical information. I have an appointment on Tuesday and want to go armed with facts and the right questions.

I would be so grateful for any help you all can give.

Thanks -

 

[Maia]

Have you seen a rheumatologist yet - or was it the rheumatologist that has been trying to dismiss your symptoms and positive ANA test? Regardless, it's time to find a new doctor especially if you get nowhere after your next appointment. Preferably, a rheumatologist who specializes in autoimmune diseases.

I have not heard/read before that Sjorgen's people tend to have the highest ANA titres; so I cannot help you there. For people with Sjorgen's that have the SSA antibodies, this can actually be associated with low or normal ANA levels.

Good luck at your appointment and have you asked if they've considered Sjorgen's syndrome for your symptoms? It is nonsense that you must have an elevated SED rate to have lupus or Sjorgen's; SED rate is affected by many things and many people will not have overt joint swelling or SED rate while having an active flare up.

 

[sozzy2]

The 1st rheumatologist absolutely ruled out lupus because of the sed rate. He was the stereotypical arrogant bully dr we've all encountered at some point. My regular dr is not expert in autoimmune diseases, naturally she believes what the specialist says. A 2nd rheumatologist did a follow-up, but really only to confirm the 1st dr's opinion, not to think about my real physical condition.

I just learned about Sjorgen's a few weeks ago myself and I haven't been specifically tested for it yet. I will ask for those tests. And look for a good rheumatologist.

Thanks, Maia, and if anyone else can advise me, I can use all the advice I can get!

 

[Raglet]

hi there

with a ana like that something must be going on because it is so strongly positive. Can you get a referral to another rheumie ? Do remember that a higher ana does not necessarily mean that you are 'sicker' than a person with a lower ANA, it just means that you have a very strongly positive ANA with is a dx criteria for a variety of diseases and yes I have read that the highest ana's of all may be associated with sjogrens, but then again nothing is definite with these diseases so that can only be taken as a tendency rather than a definite.

Personally I think that you should see another rheumie, you at minimum need to be monitored over time to see what develops if your bloods are not showing classic disease at the moment.

hth

raglet

 

[Clare.T]

Hello sozzy

Your problem is pretty well the opposite of the one we usually get which is all the symptoms and no positive ANA
I agree you need another doctor. Maybe you don't have lupus but absence of a high SED rate can't be the sole reason.
Have you got a list of all the tests that have been done and checked it against a good list of all those which should have been done?
There is really only one important question to ask: Does your doctor think you have an autoimmune connective tissue disease, of some sort ? If not, why not?
Read the questions out from a piece of paper and write the answers down.

I strongly advise against asking about other AI CTD possibilities! You might as well lie down on the floor and ask him to jump on you. I wouldn't do that even if I was a very well informed patient because it's like telling him he is incompetent.
Anyway if you are having to argue the diagnosis and quote other doctors about for example the SED rate what hope is there for a good future relationship ? Zilch IMO. Let's say by some wild chance he does change his mind and agree do you want to be treated by this doctor ?
I sure wouldn't.

Here's one quote from Dr Daniel Wallace who's one of the world's top rheumatologists. It's on page 913 of the DuBois SLE book which is the major medical text book on SLE
" Elevation of the SED rate has been noted in 54%-94% of lupus patients and is significantly associated with fevers, fatigue, alopecia, myalgias and greater disease activity when elevated........
[SED] rates can be high with no obvious clinical activity and normal with active disease........

I think I have read that the only things SED rate is diagnostic of are polymyalgia rheumatica and temporal arteriitis.

There are diagnostic criteria for Sjogren's, a mix of lab results and symptoms reported by the patients as well as other test results, notably for dry eye or mouth and more invasive tests such as lip biopsies which are usually done for academic purposes. Significant blood tests for Sjogren's are anti Ro 70% and anti La 40% and RF, rheumatoid factor. Not having these antibodies would weigh against an SjS possibility. I haven't read anything about high ANA being diagnostically significant for Sjogren's.

Autoimmune diseases are very complex and there are often overlaps and atypical cases. Being misdiagnosed is as serious as not being diagnosed, getting the wrong medicines and not pursuing the real cause for symptoms. Most medications take several months to take effect. An SLE diagnosis has serious implications for insurance.

Tests should certainly be redone if the last lot were last winter ! Who knows, there might have been a mistake with the ANA or it was some sort of freak result.

Another line of investigation is dermatology, to check out these lumps on the face.

Please let us know how you get on. We'll help you all we can to get some answers.

Good Luck

Clare

 

[sozzy2]

Hi Clare,

Thanks so much for your thoughtful reply. Can I ask your advice specifically about asking about AI CTDs?

The rheumatologist who ruled out lupus is out of the picture. He crossed the line of professional conduct by suggesting my chest pain was the result of childhood sexual abuse I saw a second rheumatologist; I was pleased with him. All the correct tests were taken, the ANA was repeated and confirmed. I'm satisfied myself that I don't have lupus. But they focused on ruling out lupus and discrediting the +ANA. Even I lost sight of the real question: why do I have a 4-year history with this pain, is it rheumatalogical? So I'm trying to restart the process with my GP.

I've had a good relationship with my GP for 10 years. She's smart and kind and normally very thoughtful, but things went awry last spring with the fuss over the ANA, then when my thyroid messed with my heart rhythm we were in a rut of treating the test, not treating me and my chest pain. I'm frustrated with her and I expect she feels the same about me. But I think we can get back on track if I show her the list of questions I should have asked, and the mistakes/annoyances we would have avoided had those questions been answered.

Bottom line: she took the ANA originally because of the chest pain. A 2nd opinion says the normal SED rate doesn't render the ANA meaningless. I don't take any of the 38 drugs that can induce a +ANA. The chest pain is not lung, heart or GI. Shouldn't we consider other AI CTDs besides lupus?

My list of AI diseases, chronic diseases and confirmed dry eye, dry mouth and Reynaud's fits the profile of Sjogren's patients. Sjogren's patients do present with severe joint pain, so I thought it made sense to ask for the anti-Ro, anti-La and RF tests.

Just writing out this story and question has really clarified my thoughts, so thank you for that! And I'm glad to have the reference for Dr. Wallace on the SED rate, it's more authoritative than the reference I have.

Having read this long boring story do you have an opinion on how I should proceed? I keep leaving out the most pitiful detail: I can't wear a bra because it hurts the ribs too much! Isn't that pathetic?

Thanks sooo much -