Sjorgens Syndrome

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Sjorgens Syndrome

Post by Guest on Mon Sep 08, 2008 4:47 am

I was wondering if I could have sjorgens. About 6-12 months ago, I had a dry mouth (desert dry) which I just assumed was from meds I was taking. Then more recently I had a strange itching (the kind you HAVE to scratch) on my head, arms, and legs - have no clue what that was but it was right before I went into a flare. My eyes have been itchy on and off too and now I get the swelling/puffiness more below my eyes than above and the next day I have the "raccoon eyes". My last blood test came back negative for sjorgens but I'm wondering if this maybe related. Any ideas?? Thanks.

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Re: Sjorgens Syndrome

Post by maidmaz on Mon Sep 08, 2008 6:36 am

Hi Chris,

I have been suffering similar symptoms and was wondering the same thing!!!! I just forget to ask my Dr each time I go confused I have looked it up on the Mayo Cinic and I don't think I have all the symptoms but here is link to the info they have.

Sorry can't be of more help!

Take Care, Hugs
xxxMaz
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Re: Sjorgens Syndrome

Post by californiacat on Mon Sep 08, 2008 9:02 am

Hi......I too have a dry mouth,scratchy dry eyes and itch so much of the time!!!I beleive it is from a combination of lupus,and medications.My rheumy did a test for sjorgens to me where she placed a small piece of cardboard in my eyes(did NOT feel good!!!) and it came back negative.So I do not have sjorgens but do have some of the symptoms.As far as feeling itchy......I am almost always itchy in some part of my body!!!I can never figure out why or from what so it is just another part of my disease that I have come to accept.Not much of an answer but it is how I view it!!!!Take care....Warmly, Barbara I love you

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Re: Sjorgens Syndrome

Post by Poppy on Mon Sep 08, 2008 6:30 pm

Hi Chris:

I, too, have the itching like Barb does - anywhere at anytime. I seem to get the itching before a flare and then sometimes it is just there. I had the dark circles under my eyes when I had the onset of my illness and now, it seems like it's going away - a little. I thought I had dry mouth, too - I do think it was from the meds because I don't have it anymore. I think mine is all lupus related.

I read your post under muscle and joint pain about how you came to find out you had lupus. I had the exact same onset. I could have written exactly as you had. And, I'm the same age as you.

I have gotten to the point like,Barb - that this is all part of the illness - SLE.

I hope this has helped you some - Smile
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Re: Sjorgens Syndrome

Post by Guest on Tue Sep 09, 2008 3:04 am

Hi Everybody!

Thanks for all the info. I did check out the Mayo link for Sjorgen's and was surprised to read how much all this stuff is related. My rheumy did do the eye test thing for tears and it was okay. I don't have all the symptoms either, just some. And I had just remembered the terrible itching that had started right before I went into a flare. I guess right now acceptance is the hardest part for me. Every little pain/ache/itch whatever, I think is that lupus acting up. I know eventually I will come to terms with it but right now I'm at the stage - what is that????

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Re: Sjorgens Syndrome

Post by kking on Tue Sep 09, 2008 5:30 am

I have tested positive for sjogrens, but did not have to go thru that awful eye test thingy barb was talking about, I found out through a blood test. The funny thing is I don't have the classic dry mouth or dry eyes. The only thing I can think of that is related to Sjogrens is that my right ear feels full alot of the time. Sometimes it will *snap*. I also get itchy, but I have no idea why. As for under the eye darkness, I have had that all my life and when I complained years ago to my GP , she said it was related to sinus. Which is also something I suffer with. probably related to the SJogrens. ???
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Re: Sjorgens Syndrome

Post by yardman417 on Wed Sep 10, 2008 5:52 pm

Hello
I also have had the itch mostly on my legs and arms with muscle jerks to go with it. My dr put me on tropomax and it stoped it for a long time then it stoped working so he switched me over to neurontin 300mg 2x a day and its working fine for me. I know we all take alot of diff meds and what works for one my not work for someone else. Hope everyone can get some relief.
flower Take care Ray


Last edited by yardman417 on Sat Sep 13, 2008 12:15 am; edited 1 time in total (Reason for editing : wong dosage on med)
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Re: Sjorgens Syndrome

Post by kking on Sun Sep 14, 2008 6:37 am

Hello, Smile

I was dx'd with Sjogrens/lupus/RA last summer, but have been relatively symptomless, until now. Though what is going on seems to be mild compared to some of you other special people.
Anyway, For the last couple of days, the glands in my jaw/neck have been stinging. Not all the time, but sometimes when I swallow, OR sometimes when I lay my head on my Hubby's shoulder, or just sometimes.
Does anyone else have tingling, stinging glands, right under the jawline??
I guess the next time I see my rhuemy, I;ll have something to discuss.

Take care all!
xoxo
Karen queen
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Re: Sjorgens Syndrome

Post by AbsolutelyFab on Tue Apr 21, 2009 10:28 pm

Karen,

I have the pain under my jawline a lot and based on how my rheumy has reacted and made note of it, I am guessing it is from enlarged saliva glands. It sometimes feells as if I'm being choked, but it is not my thyroid (yep, they've checked that but that is the one thing about me that is OK). I always thought this was due the normal swollen glands, like the kind you get in your neck, but it isn't. I have the stuffed feeling in my right ear a lot, too. It was actually a surgery I had done to sew a skin graft over a huge hole in my right eardrum that triggered my first flare and sometimes, my ear will turn bright red and hot. I have not been tested for Sjogren's as my eyes don't feel "dry" but do itch and get crusty more often....I know...eeeewwwww. HEHE Very Happy

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Beth
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Re: Sjorgens Syndrome

Post by Melody297 on Wed Apr 22, 2009 6:09 pm

I dont have the pain under the jawline. But i do have the dry eyes to the point when i cry, i dont have tears, i have the runny nose.
My rhemy said they are all intwined togehter..usually one is the underlying cause for having the other..Just one more disease to add to the resume.

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Re: Sjorgens Syndrome

Post by AbsolutelyFab on Fri Jun 26, 2009 10:09 pm

My rheumy thinks I may be developing Sjogren's. I have had no specific tests, but have the itchy skin all over and itchy scalp. I am constantly thirsty for water, have itchy eyes and the raccoon eyes.

Since I wasn't able to schedule a rheumy appt at Mayo Clinic, besides I really like my current local rheumy, I do have an appointment on Aug. 3rd to check for Sjogren's...since my glands under my jaw and behind my ears have been constantly swollen and painful.

Hugs,
Beth
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Re: Sjorgens Syndrome

Post by AbsolutelyFab on Fri Aug 21, 2009 7:40 pm

I am still waiting for the labtests from Mayo Clinic. The rheumy there requested the very specific blood work for Sjogren's, Celiacs, Antiphospholipid Syndrome, etc. Although he did the Schirmer's test (paper they put in your eye to dx Sjogren's) it it was negative, and he said that he doesn't understand why I am on MTX, Plaquinil & Pred when my ANA is negative....I still feel very comfortable with my local rheumy's dx of UCTD moving to SLE and Sjogren's.

This is due to all of my symptoms and the fact that the meds are helping me and the research I have done on my own, including message boards for autoimmune issues.

My biggest frustration now is the fact that my husband realizes something has happened to my health, and it happened very quickly after my surgery but he is in denial about AI issues, Lupus, etc. He still thinks it has to do with my age and weight gain....my weight gain started after I hurt too bad to excercise and was taking Pred.

My point is that I see my regular rheumy on Aug. 31 and I am considering weaning off my meds just to prove to my husband they are helping and there is something causing my pain and fatigue that is not related to weight or age. I need to get him off my back regarding this...I'm wasting too much time and energy arguing with him about it. At this point, I don't even tell him how tired I am or how much I hurt.

Hugs,
Beth
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Re: Sjorgens Syndrome

Post by Melody297 on Fri Aug 21, 2009 8:49 pm

Im sorry he just dont seem to GET IT.. Maybe you should drag his butt to the doc with you. I would not stop taking my meds in order to show him up. It will just make you hurt more, and we do enough of that. Just hold that head high, we all here know what you have and when he is asleep wack him with the broom.....heheheh
we got your back!!
take care
Melody

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Re: Sjorgens Syndrome

Post by AbsolutelyFab on Fri Aug 21, 2009 9:46 pm

HEE HEEE "wack him with the broom". Do you think it will work? My hands hurt so bad right now I don't think I can hold onto the broom handle.

Sometimes I think he does get it, but it scare him so he goes into this denial mode.

Hugs,
Beth
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Re: Sjorgens Syndrome

Post by christines555 on Sat Aug 22, 2009 2:44 am

Hi Beth,

Oh no don't do that - stop taking the meds if they are helping with the pain and swelling - you are only gonna hurt yourself (more)!

It is hard for family members to understand how we feel minute to minute, hour by hour, day by day. I'm sure it does scare him not knowing exactly what you are dealing with and sometimes it is easier just to deny it.

HOWEVER since your hands are too sore to hold a broom right now to give a good whack (good one Melody Smile ), then flush the toilet while he is in the shower!! That would be for the age and weight remark.

lol!

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Re: Sjorgens Syndrome

Post by yardman417 on Sat Aug 22, 2009 4:40 am

Hey the flush would not work at my house because it doesn't effect the water temp, I'm for the wack with the bloom Laughing

all kiddin aside BETH don't be playin with your meds just to prove a point!!!!! Sad

To me the age and weight thing should not be an issue as long as you get to feelin better what ever your doin.

Anyway take care
flower RAY
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Re: Sjorgens Syndrome

Post by Melody297 on Sun Aug 23, 2009 1:59 am

If the brrom is to heavy. Im sure you have a wooden spoon around the house somewhere. Shocked
People do respond differently to this disease. I had a cousin come up to me at a birthday party. and said in a low whisper.. Areyou ok? I heard you had lupus.. Like i was on my death bed.. If i had known where the broom was then i would have wacked her.We all have our good and bad days. I fell blessed to have the good docs that we have to help us these days..!!
take care
Mel....... and take a picture and post of the wacking.. hehehe

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Re: Sjorgens Syndrome

Post by AbsolutelyFab on Wed Aug 26, 2009 7:59 pm

Hello everyone!

The results from the Mayo Clinic arrived today. My husband gave me a briefing since I am at work. So here is what I know so far....

Although the Shirmer's test was negative, the bloodwork confirmed Sjogren's. I also have high blood pressure. This is why I've been short of breath, sweating a lot more, and had different headaches then my regular migraines.

My big question now is.....is the blood pressure a result of the Prednisone? The weight gain from inactivity & Prednisone? Kidney issues?

Anyone else have to deal with high blood pressure, too?

Hugs!
Beth
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Re: Sjorgens Syndrome

Post by AbsolutelyFab on Mon Aug 31, 2009 6:05 pm

I had my follow-up appointment with my regular rheumy this morning. After looking through the letters from the ENT & rheumy at Mayo Clinic, she said I DO NOT have Sjogren's at this time. It looks like the ENT based her diagnosis on the swollen salivary glands and dry mouth, but the bloodwork labs and negative Schirmer's DID NOT show Sjogren's. My diagnosis is still considered UCTD moving towards Lupus (& possibly Sjogren's). I trust my rheumy here 100%. She does very thorough physical exams and the Mayo rheumy just talked with me and looked at past lab tests from my docs here.

I asked my rheumy why would I be treated for Lupus if my ANA, sed rate, etc. are all normal. She said that based on the number of symptoms I have it is Lupus and that the blood work can change and go back and forth between normal and positive for Lupus at any time. That is why we do the regular labs. She said that the treatment appears to be keeping everything in line, so she is going to start tapering my prednisone. I will remain on the plaquenil & mtx. If my joint pain starts getting worse again, due to the tapering of prednisone, we know that the lupus is active right now.

Hugs,
Beth
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