Hey guys-
I am in need of some advice. I was diagnosed with UCTD - probably lupus/sjogrens overlap. I posted a while ago with the whole story. My question is if anyone else has had issue with enlarged lymphnodes over a long period of time. Mine are located in my chest and have maintained size for 6 months now at 1.2x1.7. I have been to a hematologist and she is not concerned for lymphoma because they have not increased in size. Has anyone else had this issue? Could this enlargement be due to the lupus/sjogrens overlap? I also have chronic ebv and wonder if it could be due to that as well? No one yet has been able to give me a reasonable explanation for this - other than to say that nodes in this area typically are not reactive. Please let me know your thoughts. . .
Thanks,
Jen

I have one lymphnode under my jaw on the left side that is always swollen, never goes down to normal. Ussually there are other nodes in my neck, chest, armpits that are swollen as well, but they same to take turns, whereas the one under my jaw just swelled up and has stayed that way (about 1 1/2 yrs. now). My Dr. says it is the Lupus causing it. The node under my jaw will occassionally have sharp pains in it as well,and gets worse when I have a cold/flu. hope this helps!:)

I don't think my lymphnodes are swollen, but the ones under my arms - on both sides are extemely painful - anyone know what that could be about? I have still not been diagnosed yet, but Doctors are still working on it. I get real short of breath lately,and have this dry little cough, along with all the other fatigue and pain. Hope I can get some answers soon.
Jan

The glands under my chin were like golf ball size, after I was diagnosed with Lupus and Sjogrens and put on Plaquenil they went down and have stayed down. My headaches are gone which were so bad every day of my life, my aches and pains are not gone, but are not near as bad, my nails are not blue tinted anymore, my skin is better too. It took about 4 months for the Plaquenil to kick in, now I would be afraid to go without it. I see my rheumatologist Wed for my 6 month check up, I also have blood work every other month. I just feel so much better than I used to, I think I'll live now. lol

Hey Everyone!!
Thanks for replying back - I actually feel better knowing that I am not the only one!! I have been on plaquenil for about 6 months now and this gland is still enlarged. Oh well!!! I have a repeat CT scan in 3 months and if it is still stable - I think the doctor is going to chalk it up to the connective tissue disease. Within the 3 months though I think I may go for a second opinion. I want to be sure that I am doing everything I can.
Let me know how everyone is doing - you are all in my thoughts and prayers. . .
Jen

HI,

I have had bouts of swollen lymph nodes, mostly my neck and collarbone area and armpits. It always ends up going down on it's own though...however I've never had them checked out. It's usually during flares that it happens.

I have not been diagnosed with Lupus or Sjogrens, but I have just about all of the symptoms of Sjogrens Syndrome. My blood work, ANA, is negative to Sjogrens, I have dry mouth, terrible aching, and also another symptom is a burning face with redness over nose and cheeks. Please can anyone tell me if they have had the burning feeling in the skin of their face but no fever. I sleep with cold packs against my skin. I am seeing an oral surgeon tomorrow for the dry mouth and I am wondering if he might take a biopsy of my saliva glands. I have been told I have Fibromyalgia, and I have been told I don't have Fibromyalgia. My legs are weak, and tingle/ache all the time, I have had headaches daily for a year and a half (MRI OK except for pituitary gland), my nose aches, my eyebrows pain, everything right to my fingers pain. I take tyl 3's, advil, and a nerve pill, this is really getting to me. My dad had Sjorgens Syndrome, so I had researched the disease years ago. I have always been "achy", now 56, female, feel like "this" is getting worse..anybody had the burning....please respond. Thank you so much.

Hi, Sashajade. Your post mentioning Sjogren's really caught my eye! I had somewhat similar problems but was finally Dx'ed with a rarer, intermediate form of LUPUS. It's called SCLE = subacute cutaneous LE & was first identified in the late 1970's as a distinct "subset" of SLE.

If I read your post correctly, your ANA has been negative. Well, mine was too, the whole way. I finally sought out a teaching hospital rheumatologist & tested positive for the anti-Ro antibody, which (alas) is seen in BOTH Sjogren's & lupus. A dermatopathologist did (finally) immunofluorescent tests on a skin punch. Voila: a Dx, after years of problems!

As I understand it, ANA in Sjogren's is often VERY high. (There's a search box above where you could check this out.) And I *think* there's one test that's considered very definitive for Sjogren's: a lip biopsy.

But in the SCLE form of LUPUS, ANA is positive maybe only 70% of the time, I was told. I was ANA-negative to the very end of my search, which made for enormous frustration.

My problems included a widespread bullous rash as a child ( = huge itchy blisters), shin pain, joint pain, low-grade fevers, hair breakage, irritable bowel syndrome, urinary irritability & frequency, UTI's, urinary stones, migraine-like headaches, sciatica, tingling up & down my arms, anemia, and fatigue. I finally got photosensitive rashes on my upper arms & torso, about 4X yearly. They looked like raised bumps for 4 years. But then those same "bumps" started expanding into targetlike circles. The rashes didn't scar, depigment, or itch. I had some dry mouth & eyes, but I was NOT Dx'ed with Sjogren's. My face definitely felt "burny" often, with & without fever.

If the above rings any any bells with you, let us know, OK? I think there are a others here, too, who were given the SCLE Dx, and yet others still who have Sjogren's in addition to some form of lupus. Anyway, I wish you really good luck with your appt. tomorrow. Take good care. Sincerely, Vee

Sashajade, After I finished my first post, I rechecked Sjogren's basic info & want to clarify something I worded badly. One author says ANA is "almost always" positive, and yet another says only 70% or so. :eek: Thus while ANA in Sjogren's can indeed go very high in some patients, it can be totally negative in others.

Again, best wishes. from Vee

Hey
My ana was actually pretty high and tested positive for SSA and SSB (I think these are sjogrens specific antibodies?). It is funny you mentioned about the flushed feeling on your cheeks, I have gotten that same feeling!! It is not everyday, but definitely noticable when it does happen.
Veej-
What were your rashes like again? I have a small rash on the top of my legs for as long as I can rememer. It is always there, and it can itch at times. It looks like small raised red bumps. I also have noticed small bumps on my scalp. They are sore and do seem to be filled with something. I can't get a good look at them to tell you more definitively.
Also wierd bumps on my jaw line (tend to stick around for a while) - they are not noticable from the outside, but tend to form a dry patch of skin that flakes off?
I don't know if any of this is related to lupus/sjogrens, but I have only been diagnosed for 6 months and feel like everything is new!
Let me know.
Jen

Hi, Jen.

Anti-Ro (SS-A): In a chart in his lupus hardcover, Dr. Wallace calls its specificity for LUPUS just "fair". It's seen in lupus, in Sjogren's, and maybe even in some other things, too. (You could try the search box above.)

There are two forms of lupus-specific rashes in which a large % of people test positive for anti-Ro & anti-La: SCLE annular and SCLE psoriasiform. (FYI, pics of both types can be found; try the search box above for starters.)

I had the ANNULAR (targetlike) form of SCLE-specific rash, on upper arms & torso. But for the first 4 years, the lesions were only red raised bumps, the size of plump mosquito bites, itchy only to the extent the affected skin was dry. Then those same "bumps" would reappear and first expand into perfect targetlike red circles with clear centers; next stage, the circles expanded further, losing their perfect circular shape; last stage, the now-irregular shapes faded without scarring or depigmenting.

(Odd, but I had the "bump stage" on my upper arms, back, & upper thighs. But the ones on my upper thighs never "morphed" into circles, while the arm/torso bumps sure did. I also had scaly scalp, with some sore spots, but I never lost hair, permanently or temporarily. On the scalp, you most worry about "discoid" lesions which CAN cause permanent hair loss.)

The second form of SCLE rash is called "papulosquamous" (or "psoriasiform"). This one is NOT targetlike. Instead it looks like psoriasis (but isn't!).

Weird fact about LUPUS RASHES: They can "cross subsets", as the dermatopathologist explained to me. For example, the rash most prevalent in full-blown classic SLE (e.g., high ANA, high anti-ds-DNA, etc.) is the MALAR rash; but "discoid" (scarring) & SCLE lesions are also possible. In the same vein, in SCLE a person gets one of the two SCLE rashes, but is also "eligible" for discoid (scarring) & malar rashes.

To picture how rashes "cross subsets", envision the three main lupus rashy subsets (SLE & SCLE & DLE) as three overlapping circles that intersect one another SLIGHTLY. (I saw just that pictorial illustration in an scholarly article about lupus rashes.) In other words, someone is most likely to get the rash(es) most associated with her main subset, but has smaller odds of ALSO getting the other two form(s).

Jen, people with anti-Ro/anti-La & rashes are often terribly photosensitive. I wear full-brimmed hats to cover my scalp & hair, sunblock on face, long sleeves, long trouser legs, closed shoes, etc. I didn't realize that with SCLE, I was eligible for scarring lesions, until my rheumie's jaw dropped the day I showed up in a SUN VISOR. I'd read Dr. Wallace's hardcover but somehow missed this key point. Sure enough, I ended up with one scarring lesion on my NOSE, but luckily, nothing on my scalp & thus no hair loss.

Let me know if this makes enough sense to you, Jen, OK? Take good care. Best wishes to you & everyone, from Vee

Dear Vee...I can't tell you how pleased I was to see that somebody replied to my post. I have been feeling pretty frustrated and physically badly. Last night was the first time that our good friends had asked us over to their place and I said no I don't feel well enough. I had managed to keep up with most things and I just can't any more. I do work part-time, look after my grand-daughter, the joy of my life, one son still lives with us...anyhow...I went to an oral surgeon this week. He said my mouth is not as dry as some sjorgens pts., but there is definitely "something" going on in my mouth. He will take a biopsy if I would like. The reason I am hesitating is that we do not have dental ins. This week I am going to phone his office and get a quote of how much it would cost. I know my health is important. I work for a dentist and she is encouraging me to ask my doctor for the SSa and SSb test. I don't believe he did that....just an ANA. I don't know how long it takes others in different countries ... or provinces to get an appt. with their own doctor...but here it takes with my doctor whom I've gone to for 40 years anywhere from 1 month up to (because he was away travelling) 3 months...and then if you want a referral....which can take just Getting the referral 4-6 weeks, then now you might wait ? months for an appt with a spec....you want an MRI/Scan........my wait for an MRI was 5 months, right away I always phone, go on a waiting list, and phone every other day. I go to my doctor next Friday, and I am not even sure he will take more blood work, as I am afraid he thinks it is in my head. Since I have seen him, in the last 6-8 weeks I am feeling much worse, my nose is much drier, more painful, my mouth is much drier, and my whole body pains much more. I will take everything into consideration what you have wrote, as I am going to have to push and almost have to diagnose myself.....take good care, and thank you

Dear Sashajade, I wonder if anyone else, other than dentists, do lip biopsies? Maybe someone can help you figure that out & then you can calculate which type of dr. could perform one sooner?

If your dentist can do a lip biopsy quickly, with no wait time, maybe that's a good bet. But can she TREAT you with the appropriate meds if the test comes back positive? Or maybe she could "fast-track" you to a another dr. if the result is positive?

Let us know how you are faring, OK? Bye for now. Thinking of you & sending my best wishes, Vee

Hi
I am new to these boards. I am told I do not have Sjogrens but just a very dry mouth....BUT, after reading your post, you mentioned the dry scallp. My scalp started getting dry & tight about 2 years, ago, and my hair started thinning. My doctor started me on Evovax about 6 weeks ago for the dry mouth, but I have noticed that my hair is shedding worse than ever. I can't touch or comb my hair without loose hairs falling out...its really bad. I was thinking this is due to the Evoxac, but maybe it all comes with the dry mouth, etc. My blood test did not show positive for Sjogrens, and i do not have dry eyes, or aches & pains. I have not experienced any other bad side effects from the Evoxac.

Hi, This is my first post and I want to say hi! I have Lupus and Sjogrens and have them pretty severely. I am not new to this...think I was diagnosed in 1988. I just saw my Rhumy on Tuesday and she said I have 44% chance more than a healthy person to get Lymphoma and I sure hope I can prove her wrong! I have so many systemic problems from both dieases and will go in to it more as I get to know you guys. I am in horrible pain 24/7 from all of the damage and it's tough to deal with. It's nice to know that I will have someone to talk to. These diseases make me feel so lonely!
Warmly,
Judy

Judy, hi & welcome. I'm glad you found the group, but I'm sorry to read you have so much ongoing pain. Have you tried anything new in awhile? Just curious. I tried both Celebrex & Vioxx shortly after I was Dx'ed. For whatever reasons, neither did a thing for me---maybe a good thing, what with the findings about Vioxx especially. Anyway, sending best wishes. Take good care, Vee