How many people have Lupus?

[msgirl]

Hi again,

I forgot to ask if any of you have Lupus?  I have read that if you have Sjorgrens, it might be caused by Lupus.

I was diagnosed with Mikulicz and that can be secondary to Hodgkin's Disease or other diseases.  Needless to say, I am scared that I might have some horrible disease besides what I already have.  I already have MS.

Can you please explain your symptoms and what you are taking for it?

[amberjolie1]

Hello!

I don't have lupus myself.  It's possible I might have CREST scleroderma with secondary Sjogren's, but it's also possible that I've got Primary Sjogren's.  The rhematologist isn't 100% either way.  All I know for sure is that Sjogren's is involved (had a positive lip biopsy).  And I've got Hashimoto's Thyroiditis.

My main symptoms right now are: fatigue, joint pain and stiffness, muscle fatigue (at least I think so - or maybe I'm just really out of shape, which is very probable! ), dry skin, splits in my fingertips, slightly dry eyes, slightly dry mouth.  I was taking salagen for the dry mouth but had to stop temporarily due to a loss of benefits and it's too expensive for me, and I use genteal gel drops for my eyes when needed.  And biotene toothpaste.

And I'm taking thyroid medication.

Oh, and I also have some weird rash thing on my arms and the backs of my legs where it looks like I have bruises everywhere, but they don't hurt and they don't go away. They just slowly get worse over time (going to talk to a dermatologist about that in a couple of months).

[msgirl]

Hi, thanks so much for the reply!  What is this lip biopsy?  Do they put you out for it?  What test do they do to confirm you have Sjorgrens?  I am new to all of this and just had some bloodwork done but don't think this doctor knew what to test for.  I should have those results back on Monday but just got my referral today to an ENT ad Rheumy doctor so probably won't be seeing them for a couple of weeks.  They will know, hopefully, what tests to order to confirm what is going on with me.

My neurologist for my ms should have known, you would think but she didn't.  My oral surgeon diagnosed me but has not ran any tests.  I am lucky I saw him as he truly cares.  I am finding most doctors don't want to deal with a patient like me that has ms and now other issues.  It is to complicated or they just don't care or want to deal with it.  They would rather ignore what you tell them and not doing anything at all.  Well, that is what my neurologist did.  She wanted to put me on injectable steroids but not figure out what is going on.  That has made me really mad.

[kim31072]

My diagnosis is Primary SLE w/a Sjogrens overlap.Lupus doesnt cause Sjogrens and they really have the same set of symptoms.Both can cause organ issue,pain,fatigue,fever,malaise,weight loss,skin issue,neuro issues,etc.

I have muscle and joint pain and stiffness,fatigue,fevers daily over 100,eye involvement(sjogrens here-dryness,corneal issue,infections from tear film loss)joint swelling,cognitive issues,insomnia,frequent infections-steroid and immunosuppressed going on 4yrs,dry skin,nose and mouth ulcers frequently,dry mouth but eyes are worse,myofascial pain-frequent migraines coming from back and neck muscle spasms.

AI illnesses seem to like to travel in pairs as most who are diagnosed with one end up with another usually pretty frequently(it seems)after original diagnosis.

The rheumy will be able to offer you the most help-keep a symptom list of things that are going on daily(esp if they are new and you dont believe they are MS related)to be sure you dont forget anything at your visit.They will do a full workup and go over your entire body even feeling joints to check for inflammation that can be felt.Its very easy in the moment to forget things that happened a couple of weeks prior.

They will likely do a full blood work up to check and have a baseline to go off of for future testing.Its a long appt.

Hope all goes well and you find some answers.

[gurs]

Ditto for me...I sound just like Kim31072

Gursie

[Scottietottie]

Hi 

My bloodwork is lupus and my symptoms are Sjogren's so my rheumy's dx was Lupus/Sjogren's overlap. In his opinion he thought I would be less likely to have organ involvement because of the overlap.

Take care - Scottie 

[BonusMom]

Raising my hand.

[amberjolie1]

I'm not sure what other tests exist to diagnose Sjogren's; I think there are some antibodies (SS-A, SS-B) that can help with a diagnosis; I didn't have these.

A lip biopsy is done while you are awake, and the lip frozen.  I think what they did was remove a couple of salivary glands. I don't know what they look for, some sort of abnormality with the cells.  I was told mine was 100% consistent with Sjogren's.  The ENT did mine.

[Karen]

I have lupus, RA, Sjogrens, my rheumy diagnosed me with mixed connective tissue disease.  I was told that most when diagnosed first with lupus usually wind up with sjogrens at one time or another, but when first diagnosed with just sjogrens usually just stay with sjogrens.
Karen

[gphx]

Some research I read stated those with SLE and those with Sjogrens often share a significant amount of the same genetic variations. It said there may not even truly be a clear SLE and Sjogrens, that everyone may fall somewhere on a spectrum in between depending upon how many and what combination of those variations they have.

My mother has lupus and I have symptoms which could be explained by it but as of last year anyway my ANA was negative. My facial rash is being attributed to 'rosacea' and the rest of my issues attributed to 'nonspecific inflammatory disease' whatever the heck that means. Works for me for now because I'm tired of dodging phantoms and dietary changes are giving me a new lease on life regardless of disease specifics.

[kwolfsheimer]

I was just diagnosed with Lupus -- got the SJS disagnosis first, but think I had the Lupus symptoms first.  I have never had the mylar butterfly rash on the face.  My symptoms started with a rash all over my stomach and torso with extreme joint pain-- this was years ago.

I am not sure what got me the Lupus diagnosis.  I lose my hair in patches all over.  I do have some sun sensitivity.  I now have a rash all over both palms of my hands that itches and burns like I have straight bleach on my skin.  I have a constant fever. My joints really hurt-- fingers, hands, hips, toes.  I have Raynauds -- even during the summer which is funny. I am starting to have some organ issues-- respiratory problems, vascular issues. With the Sjogren's, I have really dry eyes and mouth, receding gums, constant laryngitis, swollen lymph nodes.

I am ANA pos, SSA-A (Ro) pos, high sed rates, RNP pos, Anticromatin pos, but Rheumatoid factor neg.  Not sure what all that means except that it qualified me for Sjogren's.

[dbab]

I have lupus/sjogren's overlap also.  My lupus dx'd with both a skin bx on one of my rashes which came back positive for lupus cells and also with repetitive anti dsDNA antibodies.  My Sjogren's dx came first however. I also have scleroderma of the skin (morphea) on my back and stomach.