I am not leaving this group...

[Ratana21]

So now my rheumy say I have Sjogren's and change her mind about lupus. I also have alpha 1 deficiency and will get what genotype soon. Not that I want to have Lupus but something tells me she's wrong again. And if I end up truly not having lupus... I am not leaving this group. You guys are more knowledgeable and caring than any drs or groups I know. Thank you

[EOLHPC]

YAY Ratana 👍👍👍👍

Am so glad you're staying!

🍀😘🍀😘🍀😘

[Hidden]

I have Sjogrens with Hypothyroidism, and quite possibly other CTD or even possibly unrelated health issues. I still see this as my community so glad you do too.

Sjogrens is just a very closely related autoimmune connective tissue disease which, like Lupus, can progress to affect all the organs and connective tissue for some -where for others it may only affect the eyes and mouth severely.

Like you rheumies have changed their minds for me so it's hard to have confidence in their judgement now. Do you know why yours thinks you have SJS rather than SLE?

[Ratana21 in reply to Hidden]

Not too sure. She says symptoms relate more to Sjogren's and my second ana test is negative. My anti-ssa ro52 is positive which could mean a few things and not just Sjogren's. Then alpha 1...not too many ppl know much about it including my rheumy.

[vaderviper in reply to Ratana21]

Ratana21.......Maybe this will help your Rheumatologist. First, about 2%-5% of people with lupus will show a negative ANA. Second, there are now more specific test for lupus: Anti-phospholipid antibodies, Coombs antibody and Ribosomal P antibody (this antibody is 100% specific for SLE. These 3 tests can give a more definitive diagnosis of lupus.

Hope this helps.

Dr. S. (in the USA)

[Hidden]

Doctors/consultants have changed their minds so many times over my diagnosis Ratana21 so you're not alone. I'm staying put on this HU site unless I find I have something totally unrelated to LUPUS. I know I have other autoimmune diseases too, which I understand can be the norm.

Just try and relax now and I wish you a healthy happy new year. 👍🍀

[Ratana21 in reply to Hidden]

Thank you! All these tests and appts keep me on edge. Wishing you a happy new years as well.

[Hidden in reply to Ratana21]

It does make life very unsettling doesn't it I know.

The test that confirms Sjogrens, if not specific in your blood, is lip biopsy as I'm sure you know. This confirmed my SS but I personally haven't ruled out Scleroderma or Lupus for me although the former is what I wonder most about. The specific tests were negative though despite the pattern of my ANA pointing more at Scleroderma than to other diseases. I'm seeing the Scleroderma doctor in April and already started on Mycophenolate - which is the wrong way round I know but what can I do?!

I am afraid I've never heard of Alpha 1 before.

Twitchy

[Lupiknits]

I'm very happy for you to stay. As others say, we all have mixture of, often interconnected, conditions, which vary. I hope you get your test results sorted soon.

[teacher3]

I've just been through the same thing, first lupus and now sjogrens. I've been put on medication which helps both conditions so I'm running with it for now. I'll just keep in regular contact with my gp and continue to make a note or take photos of any new symptoms.

[EOLHPC]

This GREAT discussion is reminding me of an article in a recent mailing from Lupus News Today:

lupusnewstoday.com/2016/12/...

I read this article thinking, so what's new about being diagnosed with 3 autoimmune disease...I'm diagnosed with much more than just 1 autoimmune disease...and I know there are loads of us diagnosed with collections here on forum. Eg my list includes:

Infant onset SLE

Sjogrens

Lichen sclerosus

Lichen planus

To name just 4 of my immune dysfunction-related diagnoses

I guess the article is referring to systemic autoimmune conditions that profoundly affect body multisystems generally (so, LS & LP don't count, or something)

Go figure 🤗

🍀🍀🍀🍀 coco

[PMRpro in reply to EOLHPC]

I think they just haven't put their brains in gear - it has been blatantly obvious to me for at least 7 years that this might happen. Coeliac often presents with joint pain - as do how many other autoimmune disorders?

But I also think that the labels that both doctors and patients appear to want don't help. Think of all the people who comment they feel UCTD isn't a diagnosis? Or the (often ignorant) doctors who say "such and such a test isn't positive so it can't be (insert disease of choice) ..."

Autoimmune disorders are a shelf in a shop where you get handed a selection of symptoms depending on the mood of the shopkeeper. Mix and match - except they don't match. It didn't bother historical doctors, they jumped on the opportunity to describe a set of signs and symptoms and named it for their posterity!

[EOLHPC in reply to PMRpro]

Well said 👍👍👍👍👏👏👏👏🌟🌟🌟🌟

PS And then there are those like me who have non-pharmaceutically induced early onset immunodeficiencies overlapping with autoimmunities & connective tissues disorders (am thinking of my vascular ehlers danlos overlapping with my infant onset lupus and early onset hypogammaglobulinaemia) all of which interact & reinfoce/intensify our chronic multisystem symptomatology...

[PMRpro in reply to EOLHPC]

Exactly - but I'm not convinced they are different diseases, just different symptoms (which isn't the same thing at all).

I put it down to too many doctors not being properly scientific - it's my science background that tells me that there cannot be any black and white about a lot of things. And once upon a time doctors thought that way. Now they are given something from the lab - and can't see past that.

[EOLHPC in reply to PMRpro]

😆It's said that true experts tend to be the ones who know how little they actually know... & they tend to be willing to admit this 😉

[Penelope-Mary in reply to EOLHPC]

👏🏼👏🏼👏🏼

[Penelope-Mary in reply to PMRpro]

Bravo PMRpro ..very well put 👏🏼👏🏼👏🏼👏🏼

[SjogiBear in reply to EOLHPC]

What a load of stuff and nonsense . . . that it's unusual I mean:

"Multiple autoimmune syndrome is a relatively new concept in medicine, introduced to describe patients with at least three autoimmune diseases. Although it is rare to see multiple autoimmune diseases in a single patient, an increased risk of other autoimmune disorders has been reported in patients with celiac disease. But, to date, only some case reports suggest an association between celiac disease and SLE."

I think a very high percentage of us on here have multiple diagnoses of autoimmune disease (my personal collection are lupus, sjogrens and aps . . . my 11 year old has just been diagnosed with coeliac and I strongly suspect that she too may have sjogrens).

Thanks for the link as ever Coco xxx

[Cas70]

You are wise to be sceptical- whatever name they give it - your immune system is not working normally! I have SS and Discoid Lupus- I have been given Hydroxychloroquine and discharged back to GP ! Just left to get on with it - there is such indifference to our plight. Stay sceptical and strong!

[milkwoman]

Are you on any medication for autoimmune? The reason I ask is, I have SLE and Sjogrens and the oral medication to keep the inflammation and flaring at bay is the same (Plaquenil, aka hydroxychloroquine).

With my rheumy, the dx "label" is less important than the symptoms I am feeling. Both SLE and SS have symptoms of joint pain, fatigue, muscle weakness and so on whereas SS will also specifically have dry eyes and dry mouth (amongst other things). Are you experiencing these?

I'm also hypothyroid and menopausal so a lot to contend with right now, but seem to be managing for the moment.

Take a breath and concentrate on your symptoms and treatment plan rather than the label being applied to you. Autoimmune diseases are closely interwoven and I suspect that you rheumy is just trying to stay on top of what issues you may be facing next and how to best treat them.

Hugs.

[Alison-Brown]

I'm with you. This is a fantastic and more importantly knowledgable group. My Rhuemy also changes her mind. In the last 2 yrs I've had, according to her, Lupus no, fibro no, Sjogrons no, Crest syndrome. I know it's Lupus with fibromyalgia. I just feel it.

Happy new year to you

A

[les61]

I totally agree, I get more help from you guys on this sight then from any other medical personnel. There seems to be so much confusion and uncertainty that you as an individual gets forgotten in the mix. Long may you continue with us.