Sj?gren's Syndrome - Some Tests Came Back Positive

[iheartcats]

My PCP called and said some of my tests for Sj?gren's Syndrome came back positive, and to make an appointment with my Rheumatologist to get her feedback and why some are positive and some aren't.

I always have dry skin and sometimes dry eyes and dry mouth, but just figured it was allergies.

Can you have Sj?gren's Syndrome without other autoimmune diseases? Or is it usually combined with something else?

And...does it have anything to do with POTS or is this just 'something else' I have to deal with?

[erik]

Reportedly, it can be the cause of POTS for some folks... as a cause of neuropathy or denervation (which alters/disables the autonomic nervous system from responding properly/fully to orthostatic stress). I have met one person via discussion board who has POTS from Sjogrens and is now fully diagnosed & being directly treated.

Sjogrens can ultimately be found to be part of Lupus or it can be solo. Sjogrens itself can involve attack on more than just moisture producing glands (so in a way it is multi-system attack, just like Lupus) so the distinction gets kind of fuzzy. In fact, Sjogrens need not start with an attack on moisture glands (saliva, tears, etc.) though of course it is characterized by that process.

Both Sjogrens & Lupus are way more common for ladies (even higher female:male ratio than POTS, which is quite high). Also, both are typically "long diagnoses", meaning they tend to take many years to pin down with certainty. 7 yr average for Sjogrens, 10 yr average for Lupus, IIRC. In the mean time, as they progress, one can be losing nerve (or gland) function that may or may not recover later. Nonetheless, it seems some docs are not comfortable with direct treatment until things are quite clear diagnostically. This may have to do with a judgment call about treatment risk vs. disease risk which is obviously a complicated topic for both doc & patient.

I don't know the in's & out's of treatment ("immune modifying agents" or whatever) but as a rheumy and Sjogren's expert takes a closer look at your case, I imagine you will become a resident expert! I'm not familiar with the complication of having "mixed diagnostic markers" like your tests are showing, except that in general it is a difficult & fuzzy diagnosis that involves a fair bit of "clinical judgment" so that means lab tests are never the end of the story. As always, it is probably a "mixed blessing" to have a likely underlying disease pinned down... it gives a more definitive route of treatment & potential recovery.

One complication that I've come across (in my own investigation of Sjogren's) is that sympathetic nervous system "overactivation" itself can reportedly cause dryness in tears/saliva/etc. so maybe for some folks "just POTS" can be the source of those trademark Sjogrens signs (and of course plenty of "anti-cholinergic" side-effects of medications can do this as well). I don't have Sjogren's diagnosis, but I take one simple med that is typically for Sjogrens, which is called Evoxac. It is an M3 muscarinic agonist... which means it directly triggers the saliva glands to do their thing (I haven't noticed much tear increase but do like the increased salivation).

[iheartcats]

Erik -

Thank you so much. I'm digesting all this and will further read through it tomorrow. I don't see my Rheumatologist until next month so I'll have to remember to update on what she advises me to do or take (if anything) at this point.

Thank you again and I'll review when I'm more awake.

[erik]

I'd love to hear more on POTS & Sjogren's relation! I've heard of POTS attributed to "nervous system" impact of Sjogren's, but perhaps it can have to do with kidney, vascular, or other impacts as well??? I don't personally know of any "official" analysis or study of this... beyond a doctor making this finding for a particular patient (diagnosed with Sjogren's after POTS). Would love to hear a bit about what docs come up with for you (as you see fit to share, of course .

--------------------------------------------

Here are some links to consider as time permits. I'm sure they'll come up in a simple web search, but these seemed like some of the better bookmarks that I found personally useful:

http://www.sjogrens.org/home/about-sjogrens-syndrome

http://www.medicinenet.com/sjogrens_syndrome/article.htm

http://www.nlm.nih.gov/medlineplus/sjogrenssyndrome.html

This ANA test description mentions "Speckled" ANA pattern:

http://www.labtestsonline.org/understandin...s/ana/test.html

And probably good to compare & contrast with lupus since they're similar (and sometimes together):

http://www.medicinenet.com/systemic_lupus/article.htm

[miranda]

oh wow that is interesting,

you have me thinking now , 3 years ago I had some swollen saliva glands and the hospital didnt know why, I had xrays and a procedure to go into the gland. It all looked ok and was a mystery. A year later it went away. Now days I have a dry mouth constantly and orthostatic problems. I will mention this next time I go , thank you.

[tinkerbella]

I was going to be put on all the meds for sjogren's and my PC and myself decided the meds were worse than the cure. I'm on enough meds already. I started on a few and decided, no I would drink more fluids and take flax seed oil rather than meds with side effects to add moisture. The other meds would only make me sicker than I am. so for now I chose not to take the others drugs. Go in informed before you make your decisions.

Good Luck~

[iheartcats]

Erik - I always assumed my very dry mouth, dry skin, etc. were from POTS and allergies. Maybe, maybe not. It's so hard to pinpoint, isn't it? I have to have yet ANOTHER chunk of lab work before I head to the Rheumatologist. I'll bump this after I get the results and talk to her. Thanks again for all you help/info!

Bella - I agree. I don't want to be on medicines that would make me worse unless I had to be on medicines (in case of Systemic issues).

Mirrey - Definitely do mention it. At least maybe they can do some lab work on you to see if anything comes back and go from there.

I do have a lot of 'muscle pain/body pain' and fatigue. Which is the worst. But. POTS or something else? I hope I know someday!

[futurehope]

Come to think of it, I've had a puffy side of the face, and swollen salivary gland for years before the POTS surfaced. Im always fighting fatigue, like a CFIDS patient. Maybe I have Sjogren's? My neuro will be testing me on my next visit for lupus. I'll ask for a test(s) for Sjogren's as well.

[mjan]

Glad you brought up this topic. Although my tests did not prove positive for Sjogren's my first Rheumie said I just have had too many symptoms for too long so she made it a "differential dx" and started me on Methotrexate which is taken 1 time a week with folic acid and OH.. I forget the 2nd one but it begins with a P and it has to be checked by a neuro ophlamologist in case it starts to damage your eyes. Oh its called Plaquenil if I got the spelling right.

One of my ENT guys said he could do the lip biopsy and yes its not conclusive in 40% of people. The biopsy confirms the DX. He helps me when my very dry ears get easily infected and I have had to have a stint placed with ear drops..easy tx actually.

I take a pill generic is Philocarpine which I LOVE LOVE LOVE as it works immediately to give me saliva.

There is a lovely Sjogren's forum which many have dual diagnoses or disorders. I take Restatsis for my eyes and now do not take the above named meds. I went to another Rheumie who would not dx me with Sjogren's even as a secondary dx and took me off the above named meds except Philocarpine. HOWEVER>>>When I got my Dysautonmia DX that neurologist named it as "SICCA SYNDROME". Obviously have had the symptoms way too long.

Trust me you need to educate docs on this. THey may have "heard" of it but have no idea the extent and how being an autoimmune affects Dysautonomia. AND its a BIG MS MIMIC

Good luck

Warmly Jan

[iheartcats]

I am waiting on my new set of blood tests - so I will let everyone know around the end of next week what I (hopefully) find out. I just want to know what's going on, but don't we all!

[tinkerbella]

thanks for letting us know. I will be watching to hear what is up. When I went to the eye doc I asked about the lip biospy but was not up it . Too much on my plate... Got plugs and will start restasis in one month. Will return to that eye doc in a few months. Maybe then I'll do it.

xxx's

bellamia~

[iheartcats]

I went to the Rheumatologist today - I didn't get to ask everything I wanted as the office was behind and it was rushed (not usually like that or I would have taken notes with me!).

My Doctor does not think it is Lupus so I hope that is the case! I am mildly positive for Sj?gren's Syndrome but am having no real symptoms yet. I also have a positive ANA which can go with Sj?gren's Syndrome. It is something I just have to monitor and see the Rheum in 3 months. I tried to do a lot of research on Sj?gren's Syndrome and hope, if I do have it, it limits itself to the more normal dry eye/mouth/skin etc. version and doesn't go systemic!

I hate the waiting game, but there is not much we can do, is there? Just hope it doesn't progress.

I have to have a Folate test. I may not be processing Folic Acid and B12 properly, per some test or another so we'll see what happens with that. I do have to start a multi-vitamin and can always add extra B-12 and Folic Acid, if necessary.

I don't know what this says about POTS...but this sounds like stuff that could just exist if I had POTS or not. While not completely normal, I feel it is more run of the mill than POTS.

Yet you wonder if things are tied together. I tested positive for Celiac twice...elevated levels...so am now off wheat. Research I've done on that ties it to other autoimmune issues and malabsorption problems.

There IS something going on Autoimmune. But it can't be pinpointed. I'm frustrated, but have to make myself try not to dwell on it.

[jump]

Cat,

I think it probably is related somehow. SO MANY of us have various autoimmune problems and Vitamin B problems.

In my family, certain people have a constellation of problems: Celiac, autoimmune thyroid, ANA positive, POTS or POTSy symptoms. It seems to all come together in my family. No one, for example, has JUST Celiac and no other problems. No one has thyroid disease and no other problems. I think it all must somehow be related, but I don't know how.

[ByteMe58]

I wonder how many of us have B12 issues.

Back in '91 my B12 problems started, it started with stomach problems and nausea, my blood was so weak that I wasn't digesting food. After losing 40 lbs and getting so weak that I finally gave in and went to the hospital, my skin was turning yellow like jaundice.

Doctors gave me radioactive B12 and tested me after 24 hours, from what I remember, I had lost over 90 % of it overnight. It should have lasted me a month.

They told me that the body produces an intrinsic factor, this will absorb B12 from the stomach into the bloodstream. Pernicious anemia is what you get when the body stops making the intrinsic factor, some call it intrinsic anemia. So the B12 in the stomach passes through the body. That's why eating more meat or taking vitamins won't help, they pass right through the system. The only thing that helps is to get the B12 injected right into the bloodstream.

I started getting monthly injections. After about 15 years I started getting weak and tired at the end of my monthly cycle and my doctor recommended 3 weeks between shots.

I got POTS in Sept 2009 and at that time i started getting weekly injections.

A cardiologist at the hospital said he felt being anemic so long could have caused the coating of the nerves to be destroyed. So now when the brain tells the veins to constrict when you stand up, the message isn't getting through the damaged nerves. It sounded good. But I've also had 2 back surgeries and 4 epidural injections in my spine from car accidents over a 10 year period and was told spinal injuries could also cause POTS.

Frank

[iheartcats]

This is all very interesting. I know my grandmother was pernicious anemia. She still gets monthly B12 shots to this day!

I wonder if I should bring this up to my PCP - is there an easy enough way to check B12?

I have been eating more meat (I prefer being a vegetarian but will only eat chicken/turkey now because I pretty much have to at this point).

One would think things would have to be related - B Vitamins, Autoimmune issues, Celiac Disase, etc. There are enough of us here with a mixture of issues.

I hope someone has a breakthrough and ties things together. Until then...I'm sitting here worrying if I'll develop a full-on systemic autoimmune disease leaving me ten times worse off than I am now.

[Griffin]

I have POTS and Sjogren's, but I was told that chemotherapy had caused the Sjogren's. No one here is in the least bit interested in the Sjogren's and no one has ever suggeste any treatment for it, any more than any of my doctors have ever heard of POTS. I can't help but notice the difference between the UK and the States. Feels like we are in the dark ages.

[Noreen]

Hi-

I've had the plugs for just over ten years with no problems. Since I have RA and am on meds for that, they've never none a lip biopsy. Several times discussing meds it's always the whole side effect problem - and it seems like they all could cause fatigue just what I need - NOT!

Restasis doesn't always work fully for those who have the plugs. I use eye drops several times a day. I just found Biotene toothpaste at Walmart for dry mouth and so far so good.

It seems to take forever to get an autoimmune dx. Just try not to think about it and address the symptoms that bother you as you can.

Does your rheumy understand dysautonomia? It seems like every doctor I see gets that deer in the headlight / panicky oh no I didn't study look whenever I mention it.

Noreen