Author Topic: Truth or Myth????  (Read 5952 times)

Waldop

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Truth or Myth????
« on: April 16, 2008, 09:22:23 AM »
The past few articles that I've read on Sjogren's had mentioned how one can get Lupus after several years after being diagnosed, but I've always thought that MOST people get Lupus BEFORE they get Sjogrens. Is that the case or not?? I'm not trying to be a negative Nellie here, I'm just curious as to what is actual fact. This doesn't mean everyone who gets Sjogren's gets Lupus, it's just that I found those articles quite interesting and yet, I've only heard of people getting Lupus first then Sjogrens. Basically if someone is diagnosed with Sjogren's first, then they usually don't get Lupus later on.

Sorry if this thread is a bit incoherent. It's been one of those helter skelter type of days.

Hope all is well???  :D

hugs
Barrie

YICKelly

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Re: Truth or Myth????
« Reply #1 on: April 16, 2008, 09:36:31 AM »
I hope someone with more knowledge will answer this because it is something I have wondered about too.

Scottietottie

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Re: Truth or Myth????
« Reply #2 on: April 16, 2008, 09:50:26 AM »
Hi Barrie  :)

When I was sent to a rheumatologist my bloodwork suggested Lupus. My most troubling symptoms, however, suggested Sjogren's. Lots of lupus symptoms and sjoggie symptoms overlap anyway so it's hard to differentiate.

1st visit rheumy dxd SjS: second visit he revised dx to lupus/sjs overlap.

I'd be on the same drugs for either anyway.

I dunno WHAT I had first. First thing dxd was Hashimotros thyroiditis. (autoimmune)

Stuff was wrong before that though.

Good luck getting the two untangled! 

Take care - Scottie  :)
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Linda196

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Re: Truth or Myth????
« Reply #3 on: April 16, 2008, 09:51:04 AM »
As much as the two diseases mimic one another, in symptoms and lab results, they are different disease entities, both autoimmune. There is confusion about which comes first, because of the similarities, but there is no "standard" as to which one follows the other.

Part of the confusion is that if you have SjS and NO OTHER autoimmune disease, the SjS is referred to as primary, but if you have another AI, like Lupus, the SjS is called secondary. This does not mean that it came second, or that it is secondary in importance or severity, it just means that it is a another AI in a group.

Another way of looking at the primary /secondary phrasing is that once you have more than one AI, they are all secondary to a primary autoimmune dysfunction.

Often the SjS (being deemed by doctors to be a less severe and more localized process) is diagnosed after a diagnosis of Lupus, because the Lupus is much more obvious. In other cases, Someone with SjS has more "extra-glandular symptoms" (not just dry eye/mouth) and the doctors continue to look until they can diagnosis Lupus, which they feel justifies the more severe symptoms.
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Waldop

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Re: Truth or Myth????
« Reply #4 on: April 17, 2008, 05:47:09 AM »
Hi Barrie  :)

When I was sent to a rheumatologist my bloodwork suggested Lupus. My most troubling symptoms, however, suggested Sjogren's. Lots of lupus symptoms and sjoggie symptoms overlap anyway so it's hard to differentiate.

1st visit rheumy dxd SjS: second visit he revised dx to lupus/sjs overlap.

I'd be on the same drugs for either anyway.

I dunno WHAT I had first. First thing dxd was Hashimotros thyroiditis. (autoimmune)

Stuff was wrong before that though.

Good luck getting the two untangled! 

Take care - Scottie  :)

Scottie,

If I'm not mistaken, isn't there a couple of blood tests that are specific for Lupus?? I think one of them is the anti-DNA and the other anti-smith?? As we all know, the ANA is not specific in determining what autoimmune disease a person has.  I know whenever the doctor took a Lupus panel on me, the only thing that stood out was the SSA antibody and an extremely high sed rate. That's basically what they had to go on as far as diagnosing me with Sjogren's.

I remember when I first had some symptoms, one doctor said I had a subclinical form of Lupus. Quite honestly, I don't know where that came out of the blue from. I think he was diagnosing me based on the fact that I had the anticardiolipin antibodies, which more Lupus patients have than Sjogren's. But the fact being, there are some of us that have BOTH Sjogren's and the anticardiolipin antibodies, even if it's a small few.

It's SOOOOO confusing you can't help but scratch your head.

Anyhow, thanks for sharing your story with us. It gave me some more perspective in this tangled web of illnesses!!  :o :o :o

hugs
Barrie

Linda196

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Re: Truth or Myth????
« Reply #5 on: April 17, 2008, 05:59:28 AM »
And the confusion continues LOL

While Anti-dsDNA and anti-SM are specific for Lupus, they can also appear in other autoimmune diseases.
The whole autoantibody issue is a matter of percentages and statistics, with some of them coming out in the lead as indicators of particular diseases, but there can be a lot of overlap.

There's a table that lists the antibodies, and shows which diseases they may show up in, I find it very helpful. It's at http://labtestsonline.org/understanding/analytes/autoantibodies/AutoantibodiesTable.pdf
Even though the table indicates that some of the antibodies are present in certain diseases (for example anti-dsDNA) there are people who can be diagnosed as sero-negative, in the case of SLE and dsDNA that can be up to 20%.

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Waldop

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Re: Truth or Myth????
« Reply #6 on: April 17, 2008, 06:03:23 AM »
And the confusion continues LOL

While Anti-dsDNA and anti-SM are specific for Lupus, they can also appear in other autoimmune diseases.
The whole autoantibody issue is a matter of percentages and statistics, with some of them coming out in the lead as indicators of particular diseases, but there can be a lot of overlap.

There's a table that lists the antibodies, and shows which diseases they may show up in, I find it very helpful. It's at http://labtestsonline.org/understanding/analytes/autoantibodies/AutoantibodiesTable.pdf
Even though the table indicates that some of the antibodies are present in certain diseases (for example anti-dsDNA) there are people who can be diagnosed as sero-negative, in the case of SLE and dsDNA that can be up to 20%.



Linda,

Thanks for giving a very thorough and methodical explanation. There is just so much to learn when it comes to all autoimmune diseases. If you think about it it's a fascinating field. I guess it's because of people like us that we learn about the speciality itself.

That table does come in handy, thanks.  Perhaps one day there will be specific tests for Lupus and Sjogren's. It would sure make our lives easier.

hugs
Barrie

Waldop

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Re: Truth or Myth????
« Reply #7 on: April 17, 2008, 06:06:44 AM »
And the confusion continues LOL



There's a table that lists the antibodies, and shows which diseases they may show up in, I find it very helpful. It's at http://labtestsonline.org/understanding/analytes/autoantibodies/AutoantibodiesTable.pdf
Even though the table indicates that some of the antibodies are present in certain diseases (for example anti-dsDNA) there are people who can be diagnosed as sero-negative, in the case of SLE and dsDNA that can be up to 20%.



Looking at this specific table, it states that the anticardiolipin antibodies are basically in Lupus, not in Sjogren's. Now how can that be??? When was this table done I wonder??? I have a feeling that was the initial response, but not necessarily in the present day. Hmmm.....????

Anyhow, thanks again for this table it's most useful.

hugs
Barrie

YICKelly

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Re: Truth or Myth????
« Reply #8 on: April 18, 2008, 12:59:04 PM »
Thanks to everyone who answered.  I learned a lot and appreciate the imput of people who have walked this road ahead of me.   :)

irish

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Re: Truth or Myth????
« Reply #9 on: April 18, 2008, 09:14:18 PM »
It is my understanding that you can have anticardiolipid antibodies without having sjogrens or lupus. I really don't pay that much attention to a lot of that stuff. All I know is that there are a certain few symptoms that are for certain from my myasthenia and yet some of the other symptoms can come with both the sjogrens and the myasthenia. Actually as Linda stated they all sort pile up and just can keep on coming. Pretty much all of the treatment is targeted at slowing the autommune attack on our body and what works for one may not work for another.

Sometimes it seems to be such a crap shoot. All I know is that when I was in nurses training a lot of this stuff was a death sentence and now the autoimmune treatments are giving us a lot of extra years. We may not feel very good a lot of the time, but we get to celebrate more birthdays, see our grandkids and get to more weddings and funerals. lol An interesting question you posed for us Barrie. Irish ;D

Waldop

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Re: Truth or Myth????
« Reply #10 on: April 20, 2008, 06:30:56 AM »
It is my understanding that you can have anticardiolipid antibodies without having sjogrens or lupus. I really don't pay that much attention to a lot of that stuff. All I know is that there are a certain few symptoms that are for certain from my myasthenia and yet some of the other symptoms can come with both the sjogrens and the myasthenia. Actually as Linda stated they all sort pile up and just can keep on coming. Pretty much all of the treatment is targeted at slowing the autommune attack on our body and what works for one may not work for another.

Sometimes it seems to be such a crap shoot. All I know is that when I was in nurses training a lot of this stuff was a death sentence and now the autoimmune treatments are giving us a lot of extra years. We may not feel very good a lot of the time, but we get to celebrate more birthdays, see our grandkids and get to more weddings and funerals. lol An interesting question you posed for us Barrie. Irish ;D

Irish,

You're 150% right about the anticardiolipin antibodies. One can have them without any other autoimmune ailment. That's when they have it as a primary problem. It's so complicated once you sort all this mess out, it's enough to make anyone cringe.

I loved what you said about autoimmune illnesses being a death sentence at once point. That is quite true!! My aunt had polyarteritis nodosa "40" years ago, but she didn't even live a year. Nowadays they call it vasculitis and it is more treatable than it was at that point. So I guess you take what you have and appreciate it.

Thanks for your input.

hugs
Barrie

aprildawn

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Re: Truth or Myth????
« Reply #11 on: April 20, 2008, 11:07:00 AM »
Hey I have quick question since the discussion about labs.  I have positive SS-A and negative for SS-B. Are both of those for Sjogrens only and does that mean I am sero positive?  My rhuem checked again after I was on Plaquinel  and my SS-A were even higher. I thought maybe it should be lower.  Any thoughts?   
Thanks Aprildawn