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Possible Sjogren's

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Sjogren's Syndrome
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Posted 12/2/2014 3:41 AM (GMT 0)
Hey everyone,

I hope that my post isn't too long (have a tendency to do that) and that you may be able to help me out with some information. about 2 years ago I started to develop swollen submandibular lymph nodes and had them checked out by my ENT. They were fine, they ran some tests (CBC, ESR, and possibly something else) and all came back normal. I still go in periodically to check the lymph nodes for any changes. (also, have had very dry lips for YEARS, but I always bite, lick, and pick so....yeah)

Recently within this past year I noticed my lacrimal glands started to swell. I'm not sure the exact date of swelling because I didn't really notice until I got a severe sinus infection last May and then when the swelling never went down I decided to look through some old photos and noticed the swelling had been gradually happening for about a year. Again, no dry eyes, sometimes gritty feeling, and I can cry at the drop of a hat - not sure if that's an issue with sjogren's though. Oh, also have allergies and sinus issues.

Last month I started to develop jaw pain that I thought may be related to TMJ that my dentist diagnosed a few years ago (I have a scalloped tongue, bite the insides of my cheeks, bruxism, and clench my jaw like mad). I also noticed that it was swollen on the left side - which is the side that I have the most problems - and that possibly it was my parotid gland. I had a dental appointment last week and my dentist said my teeth looked great but that my gums were inflamed. She suggested I get some blood work done because it didn't look normal to her. I had been doing research for a while (online medical freak) and of course I started to put things together (swollen sub glands, lacrimal, and parotid) and did some online research. I found Sjogren's and thought it may fit the bill, but I don't really have dry mouth or dry eyes so I wasn't too concerned. I went to my PCP to ask for specific blood work because I was pretty sure I had an autoimmune disorder, just not sure what it was. We did my CBC, Immunoglobulins, ESR, ANA direct, CRP, and Sjogren's Anti-SS-A and Anti-SS-B.

My ANA came back positive
IgE above high/normal at 133 Standard Range 0-100
IgG above high/normal at 1632 Standard Range 700-1600
Anti-SS-A above high/normal at >8.0 Standard Range 0.0-0.9
Anti-SS-B above high/normal at >8.0 Standard Range 0.0-0.9
CRP above high/normal at 5.7 Standard Range 0.0-4.9


I'm curious as to whether any of you had similar results, especially with the SS-A & SS-B? Also curious about he IgG...I know it's not overly high and when I've looked at other labs they have the normal range go up to 1700, so I'm unsure of what that means. Well, I've read that it has to do with the body fighting a chronic infection like HIV or some blood disorder, but then I found something about it being linked to food allergies as well.

My PCP gave me a referral to a Rheumatologist and I'll be seeing my allergist/immunologist on Thursday. Also have an appointment with my ENT to go over this stuff next Wednesday and I'll be faxing my labs to my Ophthalmologist. I won't be seeing my Rheumatologist until January 6th, but I'm sure he'll want to do more tests and can give me some insight.

Anyway help from you all would be much appreciated as I'm not having the best year with diagnosis. I know Sjogren's can cause joint pain, fatigue, peripheral neuropathy, and muscle aches, but I was recently diagnosed with Charcot Marie Tooth type 2 last March and they exhibit those same symptoms. I'm only 33 and I keep thinking, "What else can go wrong?" Keeping my fingers crossed that this is it because I can't really deal with much more bad news. I'm concerned about the swelling lymph nodes and how bad they can get. I'm not familiar with the treatment and whether surgery is an option. Of course, that's a long ways away as it's not that bad now. But I'm the kind of gal who thinks the worst, lol.

Thanks smilewinkgrin
Posted 12/3/2014 3:01 AM (GMT 0)
It could be Sjogren's is involved in your issues, but you do have several other things going on that I'm not familiar with. I suggest you take everything up with the rheumy when you get in to see s/he. Your labs seem consistent with some sort of auto-immune issue, but the rheumy is the only Dr (of those you have listed) who is fully trained to diagnose and treat in the auto-immune field.

If you have specific questions maybe we can be of more help.
Posted 12/3/2014 3:13 AM (GMT 0)
Thanks for your response. Yes, I do realize that my rheumy will be the only one to fully diagnose what's going on and order other tests to give me a definitive diagnosis. However, I do believe my allergist/immunologist will be able to aid me with the immunoglobulin labs. I'm not sure if my allergy shots have affected those in any way. The CRP is from the liver (I believe) and indicates inflammation in the body, but my ESR which also indicated inflammation was normal. I just need a medical professional to look over them, but I wondering if the Sjogren's antibodies were low? I vaguely remember looking at a site where someone said their numbers were in the 700s.

A question I do have - that you may not be able to answer based on your personal symptoms - is how to deal with swollen glands. I really haven't been able to find that much information on that and with other disorders such as cancer, etc. they can remove the gland. Is this something they can do for people with Sjogren's that have extremely enlarged glands? (I would like to point out that my glands aren't noticeably large except to me, but I am still curious).
Posted 12/3/2014 3:25 AM (GMT 0)
I know a couple of Sjogren's patients who have had some of the facial glands drained (parotid gland is one I remember).

I think I've heard that warm damp compresses help express the glands, but I'm not sure.

There is another Sjogren's mod who has had gland issues; she hasn't been around much lately as she's been quite ill -- I will try to get a hold of her and she if she's up to coming online & giving you some tips.
Posted 12/3/2014 3:55 AM (GMT 0)
During my research I found a tutorial on how to massage the salivary glands. I believe it was on Sjogrens.org so I'll make sure to print that out. I've tried warm compresses on my parotid when it was at it's worst, but it seemed to make it feel worse which is why I think it may have been a TMJ issue. Last night I iced it for 5 minutes every hour and it made it feel better, so possibly in this case it's actually joint and muscle inflammation. But my submandibular's are a completely different story! I used a warm castor oil compress on them for a while and that did make them feel better. Nothing can reduce them at this point, I just hope they don't get more enlarged.

It would be wonderful if you could contact the other mod with gland issues, but I completely understand her absence if she's unwell.

Thank you for all of your help!
Posted 12/3/2014 11:30 PM (GMT 0)
Elevated anti-ssa (or anti-ro) and anti-ssb antibodies are anti-nuclear auto antibodies associated with several autoimmune diseases, most commonly with SLE (lupus). Your elevated CRP would also seem to back this up, although there are other tests that would help confirm a diagnosis. Not sure if you have other symptoms of SLE like rashes, joint pain, fever, pleurisy, pericarditis, Raynaud's phenomenon or fatigue, etc. If you do, getting established with a rheumatologist is in order for sure. There are several autoimmune diseases with overlap features.

Primary Sjogren's syndrome can also present with these positive auto antibodies. Primary Sjogren's can be present without another autoimmune disease, but secondary Sjogren's is common in SLE and RA. I have RA and secondary Sjogren's. I have many of the same symptoms you describe. The worst for me is the ocular dryness and constant burning. This is worst in the morning, despite eye drops every 3 hours (not easy during a 13 hour shift in the icu) and overnight gel. I did see some improvement once my RA was treated. I take methotrexate, sulfasalazine, plaquenil, prednisone, celebrex and rituxan.

Many people with Sjogren's also have dry mouth and salivary gland problems. I have these as well, but to a lesser extent. Strict oral hygiene is a must with Sjogren's if you want to keep your teeth. I see a dentist every 3 months. I use a sonic care toothbrush because with RA it is hard to hold the brush and do a good job. Best investment I've made. There are over the counter oral lubricants that are similar to saliva that help. Problem is, natural saliva helps keep tooth decay at bay...when you don't have that, you are more likely to get cavities, so you have to be vigilant.

I would do some research...scholarly sites...not Wikipedia...on Sjogren's and SLE if I was you. The best defenses is always knowledge. Best of luck to you.

Stacey
Posted 12/4/2014 12:46 AM (GMT 0)
Hi Stacey,

So you can have positive anti-ssa and anti-ssb and have lupus but not sjogren's? Or is Sjogren's always involved if you test positive with one of the two? I just assumed that I had primary sjogren's and possibly something else (I do have eczema, light sensitivity to skin and eyes, flushing, etc). But possibly it's RA since I do have joint paint. It's a difficult case because I was diagnosed with Charcot Marie Tooth type 2 earlier this year and the joint pain could be caused by my muscles tightening up and pulling on the joints. Some symptoms may be overlapping so I'll make sure to do my research and write questions for the Rheumatologist so I won't forget anything.

Thankfully I take great care of my teeth, I have a sonicare tooth brush, floss twice a day and see my dentist every three months - she was the one who mentioned my inflamed gums and that I should get blood work done so I used that as more ammo to get what I wanted tested because often times you'll go to your PCP and ask for things and they won't do it. I had known something was wrong for a while and I'm always doing research online for different illnesses, so I had a feeling it was autoimmune and either Lupus or Sjogren's.

I was concerned about the elevated CRP as well. I see my allergist/immunologist this week (incredibly knowledgeable man), my ENT next Wednesday, my Neurologist next Thursday, and January 6th I meet with the Rheumy. I have my bill filled I should say!

Thanks for your input! Definitely more to think about.
Posted 12/4/2014 4:13 AM (GMT 0)
Yes, it's possible to have SLE and not Sjogren's, and the reverse is possible as well. It's possible to have both. There are some other labs like lupus anticoagulant, etc that a rheumatologist would likely run as well. A positive ANA can be due to RA, SLE, Sjogren's, and a host of other autoimmine disorders. Some people have a positive ANA though and don't have autoimmine dysfunction. The ratio and pattern are of importance to a rheumatologist. Sounds like you need a full work up by rheumatology. The CRP is indicative of inflamatory process, which could be SLE, RA, Sarcoidosis, MCTD, etc. Etc. It's not diagnostic in and of itself but rather is taken into account with other labs. For instance, many people with RA and SLE will have positive ANA, elevated CRP, but in RA the rheumatoid factor or the anti-CCP (anti-cyclic Citrullinated Peptide antibody) test are indicative of RA, where anti-SSA and anti-SSB would warrant further work up for SLE.

You're right, CMT2 can cause unstable joints and joint pain, making differentiation between SLE and CMT2 difficult. In RA there is joint destruction and bony erosion that would point toward RA rather than CMT2. Some erosion is possible in SLE but is not as common as in RA.

The good news is that with medication is possible to live a pretty full life with SLE and RA. I still work full time in the neuro trauma icu with RA. It's not easy, but I manage. I can't run marathons or do martial arts like I once did, but in no way do I consider my life over. It's an adjustment, that's for sure. But it's doable.

I hope you get some answers soon. :)
Posted 12/4/2014 5:19 AM (GMT 0)
Thanks so much for the insight. Wow...there could be so many things! Here I was thinking it could just be sjogren's! I had looked at a few of those diseases like Sarcoidosis, MCTD, and it's so difficult to figure out what it could be (hence the doctors help, lol). I immediately latched onto sjogre's because of my swollen glands, but I suppose it could be anything. Just a waiting game at the moment.

I hope I get some answers soon as well.

Thanks again!
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