A couple questions for those of you who have had this procedure done.
1. Will it determine sjogren's even if you don't have dry mouth? My eyes are super dry but not my mouth
2. Why is it considered the "gold standard" for determining sjogren's, besides the blood tests and schirmers? My rheumatologist doesn't even do this test and says he hasn't for 20 years but I wonder why.
I'm thinking of having some type of this procedure done just am not sure what it will tell me!
Cindi
Cindi, I have not had lip biopsy,
but I am sure that if there was a poll taken here, the outcome would be NOT to have it done!
If you visit this site regularly you will soon know yourself if you have,
but it's getting Doctors to understand that we do.
I am sure others will come on soon, and you will see exactly what I mean...
Dolly
Hi Cindi I have had a lip biopsy and it leaves the bottom lip numb.
Would I have it again.... Yeah, if Im to be honest I would.
I was told it is one way to prove you have got sjogrens.
My biopsy came back with NO salivery glands at all. With that ,and 0.5 for dryness in the eye test I had done
So right there they stopped testing. I was definite sjogrens
I would have the tests again because all my life Iv known something was not quite right, and any chance to actually diagnose something was welcome.
Lots I know here would never have the test again, because of the numbness you usually get left with.
Good luck :)
I had one done (completely negative -- doctors still don't know what's wrong with me.)
I read somewhere that you have to lose 50% of your saliva to feel it -- so you could have a mildly dry mouth and not even realize it.
I think it's considered the "gold standard" because it's one of the few things that causes chronic inflammation/damage to your salivary glands. They can also use a biopsy to rule out sarcoidosis, etc. which can also cause sicca symptoms.
Some rheumatologists put a lot of stock in the biopsy and some don't. I had one done, and it included several minor salivary glands, and one rheumatologist said she thought I had Sjogren's and it was a false negative, and the other one said she didn't think I had Sjogren's.
I'd think that if you had dry eyes and any positive bloodwork, a rheumatologist would give you a diagnosis (or at least treat you as if you did have it), but I'm not a doctor, and they seem to vary in their opinions of when to diagnose/how to treat.
My biopsy was incredibly painful and I had a horrible time recovering. I have a painfully numb spot on my lip/mouth (I know that doesn't make sense, but painfully numb is the best description I can come up with.) My doctors are still treating my symptoms (sicca), even though they're still on the fence about what it is.
I would ask your doctor: "Would the results of the biopsy change how I'm treated?" Some doctors seem to want a formal diagnosis before starting the meds, and some (like mine) start the meds anyway, just in case. If your doctor isn't willing to help you without a diagnosis, then you're left to either do the biopsy, or find a different doctor.
PL
I chose not to because it would not change my treatment plan at all. With all the dryness and mouth discomfort I did not need a numb lip. As time goes by I feel less and less the need of validation. Though, sometimes, when my rheumatologist seems to blow me off, I'm tempted. But then, why have a numb lip when she might still blow me off. I'd only be hurting myself.
I think the general concensus will be don't do it.
Anna
Mine came back inconclusive and the only good thing that came out of it was that I lost 10 pounds because I couldn't eat anything solid for over a week. It would not have changed my treatment plan, and if I would have known that, I wouldn't have gotten it done in the first place.
SueAnn
So the lip biopsy will always leave your bottom lip numb?
I've had two lip biopsies: the first confirmed the Dx of SjS, as my rheumy suspected. The second one was part of the SjS study being done worldwide; Dr. Ava Wu at UCSF Medical Center did it. I had a tiny numb area from the first biopsy done in Oct. 2001 and after several years it disappeared.
Dr. Wu made such a small incision to excise some salivary glands -- she showed them to me; they look kind of like smallish Grape Nuts-- that I couldn't tell I'd had anything done. No numbness, hardly any pain. Had some swelling for a few days and some discoloration. With the first biopsy, I asked the HNT surgeon to also remove a fibroma (from biting the inside of my lip too many times) my dentist had been after me to remove. The surgeon di so, but it meant a much larger incision, so I was quite swollen that time and have a star-shaped scar. I'm fortunate that mine (a) helped nail the Dx; and (b) haven't left me with any residual numbness.
Prairie gal
Tangowhiskie,
NO, it doesn't always cause numbness, but it is common for both temporary numbness and permanent. Mine is permanent, but frankly not worth complaining about. It's just a little area, so i don't fret over it. There is also a small lump, but again, I have much bigger problems than this.
Cindi,
I would doubt the biopsy comes back positive if you have no dry mouth. The biopsy solely looks at damage to the salivary glands (from inflammation) and if you aren't dry, then there is likely no damage. Just seems like logic to me.
You should ask your doctor what he stand to change in your treatment based upon the findings. If treatment is the same, then don't do it...no need.
good luck,
Anita
From several articles I've read a lip biopsy seems to be done less and less(at least thats what I read). I never had one. My rheumy asked me about dry mouth. I was also dxed with dry eye by my ophthalmologist. My rheumy relied mostly on my symptoms and blood tests(positive ANA, SS-A and SS-B). I'm glad he didn't want a lip biopsy. I take a bottle of water to bed with me every night. I know I have dry mouth. No biopsy needed.
Thanks for all your responses and insight. I'm just so frustrated at this point and I want to know "the truth" if its out there! Thus the question I posted.
My rheumy is actually really great, he says I have mild SJS and has put me on plaquenil but I fret over being on it if I don't REALLY need it, I worry it could do more harm then good. My blood tests for ANA, SSA and SSB were neg but there were other markers he said were indicative of a connective tissue disease, namely a low total protein and low complement C4. He doesn't want to and doesn't actually ever do the lip biopsy's for all the reasons you guys have cited. I also have hashimotos thyroid which of course is auto-immune and has developed over the last few years.
My eyes are incredibly dry, measured almost nothing on the schirmers years ago. I am always drinking water or herbal tea or something so I don't know if I'm thirsty. I'm one of those people who carry around a bottle of water all the time. Sometimes I do have a sore/parched throat but rarely does my mouth feel dry nor has my dentist ever commented on it. I do wake up coughing with a really dry throat but maybe because we have the fan on in the summer and I like to drink a glass or two of wine at night ;).... I just don't know. On the other hand my nose is always dry and I have use vaseline at night to keep it from hurting.
I'm going on and on now..........
Thanks again!
Cindi:
ALL of my bloodwork was completely negative. I took part in a Sjogren's research study done by the State research foundation. They gave me several eye tests, saliva tests and a lip biopsy. The biopsy was pain free during the procedure and I had minimal swelling for a few days and some bruising on my face. The site was tingly for a couple of months and I have had nothing since. In my case, the biopsy was one of the components which made the dx valid - along with positive saliva and eye tests. (Note: there was also a neurologist who did some testing and I found out I can't walk a straight line without falling over. (Sign of neuropathy - who knew?) A dentist, who is a professor at the dental college did my biopsy. I really think the quality of the dental surgeon makes a big difference in the outcome.
I'm also one that was never without something to drink. But it was the rheumy I went to for Fibro who noticed I got gravely voiced from talking for just a few minutes and then asked for water. She's the one that enrolled me in the study. She said I probably didn't have SJS but asked me to go anyway. (They were accepting folks with and without symptoms.) They even paid me $50 to participate! :o When the results came back Primary SjS, the dx surprised my rheumy because all the bloodwork was negative. Go figure.
Anyway, if I hadn't had the biopsy I wouldn't have the dx. So, while it's not for everyone, it is still considered the "gold standard" for people like me who are sero-negative. Oh, try going shopping without a drink or gum for a half hour and see if you're desperate for a drink. I was always that way, but didn't think I had a dry mouth. I had all the symptoms but I'd never heard of Sjogren's and just didn't put it all together until after the study.
I'm so happy I had all the testing because I'm the type that just wouldn't quit until I had a firm diagnosis. I'm just geared that way. Do what you think is right for you. Unfortunately, every rheumy uses different criterion in their diagnosis. That's why so many patients get frustrated.
Hugs,
LeoLady
I chose not to have it done for two reasons:
1. It would not change my treatment.
2. As of now, my insurance knows I have sicca syndrome - - not sjogrens - - it's easier to get insured if you don't have sjogrens.
Voiceteacher
Hi Cindi,
I've also had a biopsy and would I ever have another one done? Nope, no way, no how (doctor was in such a rush, I'm surprised that he was in the room for more than a minute or two that it took to get the sample ::). I probably wouldn't have the problem of a numb area on my bottom lip if he had taken some time to do it right (keep biting the area when I eat)).
The results were a bit mixed to say the least, and I wonder if I'd taken the sample to a lab that tested a lot of them what the final reading would be (mine said some infiltration but it was ruled negative, good grief).
Anyways, if you decide to have one done, check with your rheumy, and his staff is sometimes a good place to get information as well.
As you see, the results go from one end of the scale to the other, and some rheumy's don't consider it the gold standard anymore because there is no "standard" to doing them/reading the samples. Some samples are read negative when they are really positive just because the lab doesn't see enough to read them correctly.
Take care of yourself -
Patze
I;ve had two,, one in Pittsburgh where they made a big deal out of it,,, (same day surgery),, be there three hours early,, get prepped,, it was insane,,, when I was at Mayo,, they tossed me ina chair,, the guy made a tiny tiny incision,, two stitches and I was done,,, it healed nicely and its not numb as far as I can tell,,, it came back like the first one,, fibrosis and something else I dont remember,, But I am still considered to have SS,,, course I dont have the bloodwork to prove it,, nor do I have a positive lip biopsy,,,
I'm supposed to have one for the Dr. Vivino Sjogrens Study (Philadelphia) ... but I don't want to and I might make a fuss not to. It's not going to change anything in my care and I don't really want to take a chance. I'm tired of side effects and bad things happening ....
Cindi - I had a lip biopsy in 2002 as part of a Sjogren's study at UCSF. It was a minor procedure, but for me, I already knew I had Sjogren's (both SSA and SSB antibodies via blood tests to go with my chronically dry eyes and mouth). I don't think it's worth it if you already know you have Sjogren's. I agreed to it since it was part of the study, but I wouldn't want to do it again. Good luck!
If you are fully seroneg, not even an elevated ANA, I don't think the lip biopsy will convince a rheumatologist.
If you have a +ANA, it may convince you and/or a rheumatologist. (Hasn't me nor my rheum, but did my neuro).
If you have +SSA and/or SSB, I would not think that the biopsy is worth it.
If you have PN, good chance the sicca is coming from that.....and, your biopsy could be +, mine was. I was neg. when my biopsy was +. Later I seroconverted to +ANA....which still leaves me in no man's land.
I guess after all the input I will not pursue the lip biopsy, it sounds painful and I don't want one more thing to complain about if my lip goes numb!
Inga, well I am not convinced for myself but I think your situation definitely would convince me with the positive biopsy and an elevated ANA. My rheumy says lots of false negatives occur on sjogren's sensitive bloodwork. He is treating symptoms and other parallel but distinct at this point disorders going on like the IC/PBS, reflux, IBS, dry eye syndrome, non-allergic rhinitis, hashimotos. I asked him if they (rheumatologists) think they're all related and he said yes. Its almost like its a bunch of un-related stuff going on but somehow I think and I have read literature on the theory that maybe these are all part of one disease/syndrome. Is it SJS? don't know. I don't think my ANA has been tested..I will have to ask him. That would give me a little more insight.
I guess the bottom line is he has me on plaquenil to see if my eyes improve and if my hips stop hurting. The only thing ironically that I have noticed in the first 2 weeks is my bladder feels better! Strange?
Cindi
Cindi, it sounds like you've made up your mind, and I think you may be right. I didn't have a traditional lip biopsy. Instead, my ENT harvested 4 or 5 little salivary glands from inside my lower lip, right in the front. I went to his office, had local anesthesia, was done in an hour. I don't know if getting the glands from one spot is more valid than another. I just went with what the rheumy and ENT decided.
However, my biopsy came back negative, even though I have positive ANA, SSA and SSB. So, a negative biopsy wouldn't prove that you DON'T have SjS, and I think that may be what you're asking.
Kat
Kat,
Wow I am surprised that your biopsy was negative with the positive ANA, SSA, SSB. So you are right and I hadn't even thought it through to that conclusion but I guess I was in fact wondering would a negative lip biopsy mean no SJS?
Thanks so much for helping me see that. Seems simple now that you have said it! ;D
I just emailed my doc to see if I can have just the ANA test done. I looked on-line and I only see the ANA/8 panel but no where does it show an ANA.
Cindi
I'm with Patze, and wouldn't do it again unless they paid me a million dollars and we know that would never happen. Still numb after 3-4 years.
Cindi, you mentioned always drinking water, etc. Before I got the SjS Dx, I was waking up at night with my tongue stuck to the roof of my mouth. However, after almost 5 months on Plaquenil, my saliva production improved noticeably. I still sometimes wake in the night because my mouth is dry, but it's mild compared to what it used to be. I have a sip of water and use some Oral Balance gel to counteract this when it happens.
At the Sjogren's Syndrome Foundation's national conference this past April, Troy Daniels, DDS (from dental school at UCSF) stressed that drinking too much water dilutes one's saliva so it doesn't protect your teeth. He recommended other ways to moisturize the mouth: Oral Balance; gum sweetened with xylitol; sugar-free sour lemon candies.
I work in an office by myself and often chew on a toothpick; that stimulates saliva, but is not something one would do if you can be seen by others.
BTW, my blood work all came back 'normal', so the lip biopsy helped finalize the SjS Dx in my case.
Prairie gal