I hope you get answers & feel better soon Pattybabe! My main reason for wanting a definitive diagnosis is so that I am monitored (routine lab work) for any of the potential complications that can occur with SS (liver, gallbladder, pancreas, etc). I’m all about treating things naturally and using prescription meds as an absolute last resort. For now, I’m managing the dry eyes with Celluvisc eye gel & Refresh eye drops & the dry mouth with Biotene & plenty off water.
The US criteria are very specific (and have little to do with dryness):
According to the ACR criteria, the diagnosis of Sjögren syndrome requires at least two of the following three findings:
-
Positive serum anti-SSA and/or anti-SSB antibodies or positive rheumatoid factor and antinuclear antibody titer of at least 1:320
-
Ocular staining score of at least 3
-
Presence of focal lymphocytic sialadenitis with a focus score of at least 1 focus/4 mm2 in labial salivary gland biopsy samples
In the alternative they can fall back to American-European Consensus Group (AECG) criteria where diagnosis of primary Sjögren syndrome requires at least four of the criteria listed below; in addition, either criterion number 5 or criterion number 6 must be included. Sjögren syndrome can be diagnosed in patients who have no sicca symptoms if three of the four objective criteria are fulfilled. The criteria are as follows:
- Ocular symptoms - Dry eyes for more than 3 months, foreign-body sensation, use of tear substitutes more than 3 times daily
- Oral symptoms - Feeling of dry mouth, recurrently swollen salivary glands, frequent use of liquids to aid swallowing
- Ocular signs - Schirmer test performed without anesthesia (< 5 mm in 5 min), positive vital dye staining results
- Oral signs - Abnormal salivary scintigraphy findings, abnormal parotid sialography findings, abnormal sialometry findings (unstimulated salivary flow < 1.5 mL in 15 min)
- Positive minor salivary gland biopsy findings
- Positive anti–SSA or anti–SSB antibody results
In any even Positive or negative findings on SSA/SSB is not significant without the "titre" scores as it varies by lab what the norms are. not to mention time of day for the test etc etc. The other issue is that by itself a positive anti-SSB is not specific enough by it self without a positive SSA and is currently understudy ( http://www.spandidos-publications.com/etm/5/6/1710/download ) in a number of arenas They don't doubt the signifigance they just don't know what it it is without a positive A
Diagnoses of SS is a differential diagnoses meaning there are many pieces to the puzzle. Your better docs will err on the conservative side when it becomes a "toss-up" They will treat the symptoms but you do not want anyone messing with your autoimmune system unless they clearly know whats going on.generally turns out badly. Even when they do have a clear idea the DMARDS and Biological meds work about half the time and take a fair amount of experimentation to get to the right mix.
If you go in an mess with IL-6 (interleukin 6) which is the cause of fatigue in SS and it its NOT the problem, you can cross the blood brain barrier, what was likely not SS but rather a collagen type arthritis (which acts the same way) you now have a whole new disease which is effecting your neurological system. Sometimes time will allow you to recover, sometimes they just keep adding treatment after treatment until nothing recovers. We ALL want to feel better but caution is the watchword.
Rheumatologists are the detectives of the medical world. there likely is not a more intellectually difficult field in medicine.
I totally agree! My dental hygienist told me to sip water from a straw and not a lot at one time so it doesn't wash away the good saliva. I also put cucumber and lemon in it and love sipping on it. She also suggested Spry gum, mints, floss, etc because it has lots of xylitol and helps prevent cavities. Warm compresses on eyes also help. Refresh PM ointment for eyes at night. Opthamologist suggested PRN fish oil also Eye Promise is also a good product for eyes, Restore in particular. I too use the Biotene products.
Good luck to you too.
Disneygirl said:
I hope you get answers & feel better soon Pattybabe! My main reason for wanting a definitive diagnosis is so that I am monitored (routine lab work) for any of the potential complications that can occur with SS (liver, gallbladder, pancreas, etc). I'm all about treating things naturally and using prescription meds as an absolute last resort. For now, I'm managing the dry eyes with Celluvisc eye gel & Refresh eye drops & the dry mouth with Biotene & plenty off water.
Thanks tj. We rented Dallas Buyers Club this weekend and it helped me understand that just because the FDA approves something, doesn't mean it won't do more harm in the long run. Outstanding movie.
Appreciate your sharing of knowledge and experience.
tj1 said:
The US criteria are very specific (and have little to do with dryness):
According to the ACR criteria, the diagnosis of Sjögren syndrome requires at least two of the following three findings:
In the alternative they can fall back to American-European Consensus Group (AECG) criteria where diagnosis of primary Sjögren syndrome requires at least four of the criteria listed below; in addition, either criterion number 5 or criterion number 6 must be included. Sjögren syndrome can be diagnosed in patients who have no sicca symptoms if three of the four objective criteria are fulfilled. The criteria are as follows:
- Ocular symptoms - Dry eyes for more than 3 months, foreign-body sensation, use of tear substitutes more than 3 times daily
- Oral symptoms - Feeling of dry mouth, recurrently swollen salivary glands, frequent use of liquids to aid swallowing
- Ocular signs - Schirmer test performed without anesthesia (< 5 mm in 5 min), positive vital dye staining results
- Oral signs - Abnormal salivary scintigraphy findings, abnormal parotid sialography findings, abnormal sialometry findings (unstimulated salivary flow < 1.5 mL in 15 min)
- Positive minor salivary gland biopsy findings
- Positive anti–SSA or anti–SSB antibody results
In any even Positive or negative findings on SSA/SSB is not significant without the "titre" scores as it varies by lab what the norms are. not to mention time of day for the test etc etc. The other issue is that by itself a positive anti-SSB is not specific enough by it self without a positive SSA and is currently understudy ( http://www.spandidos-publications.com/etm/5/6/1710/download ) in a number of arenas They don't doubt the signifigance they just don't know what it it is without a positive A
Diagnoses of SS is a differential diagnoses meaning there are many pieces to the puzzle. Your better docs will err on the conservative side when it becomes a "toss-up" They will treat the symptoms but you do not want anyone messing with your autoimmune system unless they clearly know whats going on.generally turns out badly. Even when they do have a clear idea the DMARDS and Biological meds work about half the time and take a fair amount of experimentation to get to the right mix.
If you go in an mess with IL-6 (interleukin 6) which is the cause of fatigue in SS and it its NOT the problem, you can cross the blood brain barrier, what was likely not SS but rather a collagen type arthritis (which acts the same way) you now have a whole new disease which is effecting your neurological system. Sometimes time will allow you to recover, sometimes they just keep adding treatment after treatment until nothing recovers. We ALL want to feel better but caution is the watchword.
Rheumatologists are the detectives of the medical world. there likely is not a more intellectually difficult field in medicine.
Try using a cucumber for the bread in a sub sandwich............... I can't eat much bread but love subs
Wow tj1! You sure know your SS facts! Are you by any chance in the medical field?
As I mentioned in several of my previous posts, I prefer to treat things "naturally" and only take meds as a last resort. I also do not believe in "doctor shopping" by searching for a doctor who will tell me what I want to hear; I just want to find out what is going on with my body so that I can get better.
Thanks again for the info and your support! :)
The important thing is to have doctor who recognizes your symptoms and need to get relief. Lots of folks don't "score" right, that doesn't mean they aren't entitled to relief..... The folks here have plenty to offer, and frankly probably MORE to offer than a script pad. When ypou talks about whats going on with your body, they know EXACTLY what you are talking about. As comforting as a label may be, it not always necessary to have one to get treatment or feel better.
The journal is a great idea in fact these are all good ideas…As a nurse with Sjogrens I would also recommend looking for a doctor that is familiar with Sjogrens. There are some very good doctors out there. I saw about 5 different doctors before I found one that understands and treats Sjogrens. Please don’t lose hope. You have a lot of support here.
I to have these experience with the Drs.I have sent me to Rheumy he could not get to the bottom of my heat sensitivity so I waited for 2 months to get referral to see another ryeumy and this rheumy said sjogrens does not cause heat sensitivity that I must have something else it took me ten years of going to Dr after Dr to find out why I have these burning achy thirst and scratchy eyes my Dr told me to move to a Alaska stay out of sun my job requires Me to go out in heat and sun, only go out at night carry umbrella . The Dr told me the aching was caused by me getting older. I was 40 something at the time. Now This rheumy is sending me to a endocrinologist telling me its hormonal or in the glands so more blood tests.meanwhile I am losing my job losing my insurance and am at a block trying to get disability Job says I cant work Dr says just dry mouth dry eyes. I have also been to neurologist he told me he can do nothing else for me after doing many tests on me. I come to this forum and I feel as if each one you is going trough the same frustration mental physical pain unknowns that I am. I can relate to each of you. and I am so sorry to here about all of the frustrations of this sjogrens and all the extra add on symptoms. Sorry about my terrible writing skills I read allot and never reply my writing is not good but thank you all for the support and knowledge that each one of you give.
I've mentioned it before but it seems germane … my GP sent me to a highly regarded Rheumy at a time that I was in a 2 month flair up so bad I could hardly move (and couldn't stand being in my body another second). Her standard tests didn't show anything so all she had to say to me was "You can come back if you want but there is no point. There is nothing wrong with you". The GP accepted her word as such. It delayed my diagnosis and treatment for years. They eye doc was the one who caught it. Thankfully I have a great team of doctors now but if you feel blown off, you have to advocate for yourself. Sometimes that means going to someone else who will take the time to keep looking beyond the simple.
I got my test results today and and all negative but my Rheumy sent me for more blood work and put me on amitryptline (sp) and wants to try 2 weeks of predisone to see if it helps. If it does he will be me on another regimen that I can use long term. So grateful I don't have RA and have a doc who is not giving up! Really tired and of to bed.
Hope all are safe and warm.
Well I saw my GP on Wednesday and she went over the Rheumatologist's notes and the labs that he ran. Everything was within "normal" limits; so, no diagnosis. She said that even though I tested positive for one of the markers that it's just that, a marker, & that it does not mean you have the disease. She ended up re-running my Vitamin D levels since I was deficient the last time she ran them. I'm happy to say that after months of popping supplements, I'm now within the lower limits of the normal range. Still having all of the symptoms though and and more fatigued than ever. See my eye doc on Tuesday for a followup on my dry eyes. Just tired of going to doctors and leaving without definitive answers, but I guess almost everyone on this board has been in the same boat.
Hope everyone has good weekend!
Yep,all my tests were negative and most happy the RA was. He ordered another test and put me on medication. He seems to have worked with Sjo a lot and determined to get to the bottom of what's ailing me!! I am feeling a bit better and so sorry your'e having such a hard time Disneygirl.
Hope this is a better week. You are not alone.
osing my job tomorrow due to the fact i can not go out in the heat they say there is nothing they can do for me feeling nervous losing my insurance sick to my stomach., I have been a class room aide for 15 years. I feel so over whelmed I see so many people here with the same problems thank you all for sharing. i feel so isolated and alone i have read on here for a while now and it has comforted me so. not that anyone is suffering, but i am not alone and so many drs just tell you its not my specialty.I have had sjogrens for quite a while and it showed on a blood test 4 years ago and I was just told 1 year ago the drs tell me sjogrens does not have heat sensitivities so they are telling me I have some thing else have been tested for so many things. now out of insurance at my wits end thank you for the place to vent thank you. Tomorrow is a sad day but at least its over with i can move forward just know income i m scared how i will survive what a headache this sjogrens is . ihope im putting this in the right place sorry i got mixed up ere to put it
Daily have you contacted the Labor Board in your state? There is generally protections in place to keep you from being fired completely for medical reasons or disabilities. They may be able to give you some direction.
I’m trying to make heads or tails out of my focus score.
Is Salivary Gland tissue showing focal lymphoid Infiltrate with a focus score of
1 FOCUS /4MM SQUARE positive or negative?
Its negative. A positive requires a focus score of greater than one and biopsy of FIVE or more glands.
Chickadee said:
I'm trying to make heads or tails out of my focus score.
Is Salivary Gland tissue showing focal lymphoid Infiltrate with a focus score of
1 FOCUS /4MM SQUARE positive or negative?
As long as your symptoms are being treated. This was something interesting I found.
Chickadee said:
I'm trying to make heads or tails out of my focus score.
Is Salivary Gland tissue showing focal lymphoid Infiltrate with a focus score of
1 FOCUS /4MM SQUARE positive or negative?