Hi everyone, my doctors and I have been struggling to get IMMCO to send the "early Sjogrens test". I have been waiting literally over a month to have the test performed, and both my doctor and I have received multiple explanations from IMMCO, yet neither of us have received the test kit they have supposedly sent. My doctor suggested the lip biopsy instead, and I'd like to know what your thoughts are on this? Does it damage your ability to produce saliva even more? Does it cause nerve damage? I've heard horror stories and I'm scared to do this procedure unless it's absolutely necessary. Thanks!
I did not have any trouble. It is best to have ENT docs preferably as they probably do more of the lip biopsies. However, it is also wise to ask our doc how many they have done as it takes experience to do this procedure correctly. Because there is this new test out I would advise to wait for it to come. Keep bugging the people who are to send it to you.
There are enough people who have some stories to tell about their lip biopsy plus, it is not an emergency procedure that needs to be done ASAP. Waiting days or weeks won't make much difference because you should be having your symptoms treated anyway. I had to wait 39 years to have my lip biopsy and get diagnosed. I knew there was something serious wrong but a whole bunch of docs didn't believe me. Hope all goes well for you. Irish
I did this at Hopkins. The ENT verbalized the whole procedure as she did it with her fellowe in training.
Basically the fold your lip over, inject with lidocaine (feels like a pinch), and the rest you don't feel anything.... this is where they make a small incision to collect the tissue sample. It is typically taken from the middle part of your lower lip (where the minor salivary glands are).
It amounted to a tolerable pain (on the level of a pinch) for about a week. The dissolvable stitches kind of came out over the following 3-4 weeks from what I remember. I remember the weird sensation of the loose stiches against my lower bottom lower gums...
All it all... it was a necessary evil. No loss of feeling occurred from it, I can barely feel the incision spot with my tongue now... so little/no scar tissue.
Who interprets your sample does matter though. Recommend it be a learning institution like Hopkins or Duke University if possible, as they just know the nuances... even from samples that would ordinarily be undeterminable to other folks.
Its too early in your case to go for lip biopsy.
Even if you have sjogren, in this very early stage lip biopsy can come negative.
Get your early sjogren test which is less invasive and more dependable in early stage.
Get rps inflammadry eye test done which is easy and quick and a good indicator of sjogren.
Disagree with the too early statement...
I received early diagnosis with the lip biopsy.
It may not show a high foci score with lots of aggregates/infilatrate... but even if it shows just enough in the right pattern... it's enough to signal that there is an immune reaction and loss of tolerance within the salivary gland epithelia.
Don't wait for it to get bad, only to go in and get a biopsy and get late treatment. If there is enough suspicion (i.e. tests that happylife mentioned) along with obvious symptoms.... I'd let them proceed to biopsy. It's well justified.
For what it is worth, my disease onset was Aug 2017. My lip biopsy was in November of 2017, followed by diagnoses in December. You really don't have to wait for time to pass to tell what is going on.
I was diagnosed with a lip biopsy because my SSA and SSB were negative. I was SO relieved to get the diagnosis because so much else was just "iffy" I had a weakly positive ANA, high sed rate.
My experience was not bad. He took two little saliva glands out and the incision was small. It was uncomfortable for about a week. I had a little numbness for a while afterwards of the incision but it wasn't a problem. Well worth getting my diagnosis. I would talk to the doctor who is doing the biopsy first or his nurse so you are completely comfortable with whoever is doing the procedure. It should be a very small incision, like 1/4-1/3 of an inch. I have heard of some bad experiences and there is no excuse for that except incompetency.
i had two lip biopsies because all the doctors I had seen did not believe I had sjogren, my eyes were dry, schimer test that I made many times , sometimes was 0 and 2 sometimes up to 5 and 7 but I was sure that something was wrong. I had anti ana slightly positive and rheumatoid test also slightly positive.
I insisted I wanted a lip biopsy and I was terrified, did not sleep for days and was histeric. well I did not feel anything, no pain at all, a little discomfort afterwards but I put some ice and took a pill for a couple of days. no scare no odd sensations. lip biopsy came out negative.
sensations of dryness went on , one day my mouth was completely dry so I wanted another lip biopsy, two years had passed, I was less scared but quite anxious anyway. things went on like the first time but lip biopsy came out positive.
don't worry about the operation but go in a place where they are used to do it, good luck
The other issue with having a lip biopsy done in the early stages of Sjogrens is that much of the time they come back negative. This is always discouraging and so many doctors will then decide that just maybe you do't have Sjogrens. Quite a few people on this site have been very discouraged when their lip biopsy came back negative as they were depending on it to be positive and make a huge difference in their treatment.
Just to let you know that sometimes docs will have the lip biopsy done in a surgical suite with all the equipment, etc. This is really an unnecessary expense. I had mine sitting on the edge of the table in docs office. He injected novacaine in the inside of the lip and left the room for 5 minutes or so. Came back, used a scalpel to slice off the needed tissue and then stitched it up with a few stitches. It is knowing where to take the biopsy and how deep to go that counts. The goal is to get the little areas with lymphocytes. And, yes, it is very imporotoant to have pathologists who are good at reading these biopsies. Also, my stitches dissolves in 4 days and I still healed up without any nerve pain.
I had a swollen lip fr a couple of days and put ice on it a couple of times and took a tylenol. It was no big deal. Most important is to ask your doc how many of the lip biopsies he has done and also how often he does them. Have to do them often enough to keep up the skills. Having a positive diagnosis didn't change my treatment but it shire took all my docs my surprise as they never even guessed that I had Sjogrens. I knew I had some darn thing. Good luck, Irish
Thank you everyone for your comments! I will keep everyone posted on what happens over the next couple of weeks. I am still trying to get the early test performed, but each day that passes with no word makes it seem less likely that IMMCO is ever going to send it to my doctor's office.
Mu thought is that IMMCO is overcome with orders for the test. I bet every patient and doc that have heard about it want it. Good luck. Irish
I can relate to all the concerns expressed here. I am scheduled for a lip biopsy Monday and I am terrified. The scary thing is I don't know if I'm more afraid of a negative or positive result?
Well I just had my lip biopsy a couple hours ago. The numbing is just starting to wear off and I can feel a bit of burning and throbbing. The procedure itself wasn't too bad, only bad part was the shot to numb it. She retrieved 7 or 8 salivary glands, stitched me up and said it takes about a week to get results. I go back on the 13th for results. I will be on pins and needles until then.
I had read this article before going in for the procedure, and was relieved when she told me she's done several of these procedures and only does it with linear incision and not a punch! Beware of the punch! https://www.ncbi.nlm.nih.gov/m/pubmed/23838523/
I'm still not sure if I'm more worried about it being positive or negative? If it's negative I'm afraid I will not get the drugs needed to slow the progression and that worries me because I am pretty certain I have it. I have all the symptoms and I have Raynauds. So clearly something is going on. If it's positive it is also a scary thing I'll have to learn to face, like the rest of you. This forum has been quite helpful getting me to this point so far. Appreciate all the knowledge here.
What type of doctor did your lip biopsy? If I decide to do this procedure, I want to make sure the person doing it has a lot of experience and that the right people interpret my results. I live in Arizona, and I can't seem to find any "experts" on this condition and I'm seriously considering travelling to Johns Hopkins if my Early Sjogren's test comes out positive.
Hi Deseree, it was done by an ENT doctor who actually specializes in plastic surgery. She told me she's performed the procedure many times. Hoping the lab technicians have too.
hey Jude how was the procedure?
Hey Blue, it really wasn't too bad, worst part was the shot. My lip is still numb though so I'm hoping it doesn't feel too bad when the shot wears off. I have 3 dissolvable stitches and she removed about 8 minor glands. Time will tell.
i actually was diagnosed at 13 and i had 3 Biopsy's done none went bad just alot of pudding eating lol however some sjogrens tests dont always come back positive but this is the best way to get it done. if you rube your tongue against your lip you will feel bumps they just take out one of toughs lumps it was scary but helped us determine that it was in fact sjogrens
bclark18, if you don't mind me asking, how long have you had Sjogren's since you were diagnosed?
Bclark I'm so sorry you've had to deal with this at such a young age. I hope you are managing things ok. I can't imagine having a lip biopsy three times, but if that's what it takes I will do it. I just want to know for sure. Is it normal for your lip to still be numb 24 hours later? My lip feels and looks like a small ballon and is still numb? Hoping the feeling comes back when the swelling subsided.
Well it took about 5 days to start getting feeling back in my lip, and today about 8 days later there is still a knot in my lip that is numb with some weird pulling feeling. I am hoping it will keep getting better, nothing I can't live with though.
I got my results tonight. I had a focus score equal to 2. ENT doc told me anything over 1 is indicative of Sjogrens. She said she is not the right doctor to make the diagnosis or explain it to me that it has to come from my rheumatologist, and also has to coincide with other positive tests like Schirmers.
I already had Schirmer test with results also indicative of Sjogrens of 0 and 2. So I'm thinking with those two tests being positive I will have a confirmed positive diagnosis when I see my rheumy next at the end of December.
I can't find much on the internet about the range of the focus score and it's meaning? Is 2 high? How high does it go, does anyone know? I went in not knowing what I wanted the results to show and I'm still not sure, it's all so overwhelming and a lot to take in. I guess I wait to see what my rheumy makes of it all now.
I think you need a foci cluster score of >50 in one salivary gland to meet the criteria so yes you do I believe. Mine was all 5 removed making it 100% but the rheum said he couldn't recall last time he'd seen such a positive result so I'm guessing this means I've had it for a long time. Certainly feels very advanced to me but no one has said more than seronegative Sjögren's.
Hi Mat, I am a little confused by the foci scoring. From all my research I believe a cluster of more than 50 infiltrates in 4 mm2 area = foci score of 1, so if my foci score is 2 does that mean I had twice that number in the same area? I am confused. Do you know what your foci score was? The highest foci score I've been able to find in any publications so far has been 3. I don't talk to my rheumy till the end of December and the ENT doctor said she is not an expert on it and couldn't explain it to me.
From all I can gather a foci score equal to or greater than 1 is positive. This is the best description I've been able to find so far... from:https://www.ncbi.nlm.nih.gov/pubmed/3473649
"According to current agreements, the verification of SS should consider all three components of diagnostic relevance: focal sialadenitis, keratoconjunctivitis sicca and an associated disease. Focus score (the number of mononuclear cell infiltrates containing at least 50 inflammatory cells in a 4 mm2 glandular section) of greater than 1 is probably the single most important test result in the diagnosis of the oral component in SS. Without such quantitation mild, nonspecific inflammation is often falsely classified as focal sialadenitis suggesting an underlying SS. This was confirmed by a retrospective study of a slide library, which showed that most cases descriptively diagnosed as focal sialadenitis actually had focus scores of less than 1"
Hi Judes
What i have found from my research is that ACR2016 sjogren criteria is for identifying patients for research purposes. Sjogren is mostly a clinical diagnosis and only 50% of these clinically diagnosed patients will meet the ACR2016 criteria.
For e.g if a patient has inflammatory dry eyes + joints pain + daily fatigue + peripheral neuropathy....will not pass ACR2016, but most rhumetologists will diagnose this as sjogren.
Happylife.
Hi happylife,
I only know my rheumatologist would NOT diagnose me without a positive lip biopsy. Now that I have that, I am hoping when I see her at end of December she will confirm my diagnosis and now offer drugs that will help slow the progression. Without it, she would only treat my symptoms with Cevelimine, no steroids and no plaquenil, nothing else was offered other than telling me to see different doctors. And she made it seem like my nerve and muscle pains were in my head. So now maybe I can go down a different path, I still need to decide what I want to do, I am not sure what drugs I want to even try at this point, they all scare me.
Sounds like you may need to find another doctor even with a positive lip biopsy. Your doctor is not taking your symptoms seriously.