Morning everyone! I hope you’re all having a good weekend.
I’m having a lip biopsy for Sjogren’s tomorrow and am wondering if anybody who has had it can tell me what to expect please?
Thank you,
Jasmine xx
Sjogren’s lip biopsy: Morning everyone! I hope you... - LUPUS UK
Sjogren’s lip biopsy
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Jasmine22
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Yes I had one 3 years ago. Mine went fine - just a few stitches, some swelling, bruising and a strange neuro sensation of a hair in the wind being stuck to my lip for a few weeks or so. Less awful by far than lots of other procedures I’ve had including dental work. No permanent nerve damage and no regrets as the results gave me the clarity I needed. Best of luck!
Jasmine22 in reply to
Thank you Twitchytoes! I think it’s like most things in life, the fear of the unknown and also that I’m terribly squeemish and am wondering where I’ll look whilst it’s being done. Take care.
in reply to Jasmine22
Oh me too re squeamish! And the circs of mine were dire as it was a very hot day with sun pouring into the university dental hospital surgery, no air con and no drinking water available so the two women hanging over me or for me to swill afterwards - they apologised and discussed this with each other and students while hanging, dripping sweat over me. I’m sure yours will go better than this but do take a water bottle with straw in with you just in case.
As for where to look during the procedure - tricky. Try to close your eyes and think of something lovely. I have severe dental phobia now after bad experiences with root canals and recent extraction. I have 3 x 90 minute long dental surgery appointments coming up next month and I’d rather have any number of lip biopsies than this necessary but complex dental work! Xx
Jasmine22 in reply to
Oh, bless you. I hope they go well. I hate dentists with a passion!
I just chatted with my daughter about the biopsy and she thought it was funny that I was wondering where to look. She and her husband are both consultants and deal with saving lives on a daily basis, so I know my ‘stuff’ must seem trivial.
If only we could have evolved to not have all of these illnesses!
Have a lovely Sunday xx
in reply to Jasmine22
Yes I have to say my experience of dentists or dental work over the decades has not been the best! I’m having bad dreams about it - the local injections particularly as I find them incredibly painful.
It’s a strange thing because I have lived with untreated chronic pain for most of my life but there’s just something about the mouth? The good thing is that the endodentist undertaking this work is a doctor of dentistry and he’s very nice. And the torture will be free! I just wish like anything that I could have it done under general!
Just one question for you though - if you already have diagnosed RA and Lupus then why do you need a lip biopsy to confirm Sjögren’s? Usually it would be diagnosed as a secondary disease by symptoms alone to RA or Lupus?
Jasmine22 in reply to
It’s awful when the worry affects your sleep too. There’s no escape from it all then. Absolutely there’s something about the mouth! I can handle the rest of me being treated, but once they move to my head I can’t handle it.
You’re getting torture for free! What more could you ask for 😊 I have to say that I would avoid a general anaesthetic at any cost though.
Yes, my situation is very confusing! I don’t have a positive ana, but I have many lupus symptoms including the butterfly rash on my face. My consultant decided that as I’m still deteriorating, he wanted to take me off my steroids and induce a flare, following which he would order more tests which include the biopsy. Xx
in reply to Jasmine22
The rashes on face are almost as common with primary Sjögren’s as with Lupus apparently. I’ve had them since I was young. Perhaps you have Sjögren’s rather than Lupus as it mimics RA and is much more often seronegative than Lupus?
Jasmine22 in reply to
Maybe I do! 😊 I haven’t been to work since April and my mobility is atrocious
Hopefully they will be able to provide me with some answers in the not-too-distant x
in reply to Jasmine22
Sjögren’s is the absolute pits for fatigue I find. The SS specialist I saw on Monday explained that her patients often complain that they can’t work and feel so lazy and immobilised. She tells them to tell friends, family and colleagues that having Sjögren’s is like having flu 24/7. Feels about right to me! X
Jasmine22 in reply to
Yes, that’s what I always tell people. I have to carry out home assessments, as I work in social care. I was pushing and pushing until I fell asleep at the wheel on my way to a client. I then knew I had to stop. I can no longer even walk around a shop and I have had to succumb to having a wheelchair. It snatches away your life! X
in reply to Jasmine22
Heck I can relate. I’m a self employed artist married to a fellow artist and social care support worker. He just had to help me out of the car and back into the house with us making jokes about hoists! I don’t earn a bean nowadays and certainly couldn’t hold down a proper job! X
Jasmine22 in reply to
My partner and I joke about things such as hoists too. He has had to have time off work to care for me. He’s brilliant, but I hate having to rely on him X
Hi Jasmine, thanks for your story. May I ask, is succumbing to the wheelchair worth getting out more?im increasingly housebound and know a wheelchair is the answer but I just freeze when I consider it, it’s becoming an issue for me. How did you finally decide enough? Good luck with biopsy. Terri X
Hi Terri,
I went from being very active and always out on my racing bike, to being constantly in pain and not even able to stand long enough to cook a meal.
I started off with a walking stick; a bright pink, trendy one which didn’t seem so bad. I was totally adamant that I would never have a wheelchair, but, as my children kept telling me, it wasn’t fair on my partner, as I kept ending up falling to the ground with no warning.
We had a holiday to Malta booked for last week and I knew that I wouldn’t even be able to walk across the airport, so decided that I needed to sort things. I purchased a fuchsia wheelchair and booked special assistance at the airport, whereby I had a lift to get me up to the plane door.
I’m not going to say that it’s easy, but I had several people remark upon my chair when we were in Valetta, with one lady wanting to know where I had purchased it as her disabled daughter would love one like it!
I think it’s about dealing with the now. Today my hip is so painful that I can’t even walk to the bathroom, but I keep the belief that this is all going to improve. I will get back on my bike and I am still going to Iceland in December.
Please think of the advantages Terri. Nobody could have been more against being pushed around than I was, but if it gets you out and about again it’s so much better than being stuck in feeling sad and useless. And who knows what tomorrow might bring?....X
I had one a couple of years ago. Nothing to worry about, quick procedure, didn't feel a thing. Couple of stitches. No problems for me. My lip biopsy came back inconclusive but I am being treated for sjogrens. I am on a d.m.a.r.d. drug called mycophenolate which isn't helping the dry mouth/eyes so rheumatologist is changing my med on Friday to azathioprine I think as I did have blood test to check I was ok to go on it. You will be fine. Nothing to be worried about. It's over before you know it. X
Thank you Mandypandy! I’m really grateful for your reply. It’s always good to know you’re not alone X
No problem at all. We are all here to help each other. Xx
I had a lip biopsy two years ago, it was fine while they did it you only feel some tugging but keep painkillers very handy for when the local anesthetic wears off. Good luck
Hi Jasmine. I’ve been on a clinical trial for the last year and had to have 3 lip biopsies as part of it. Honestly they were fine. Injection in your lip..sharp, but over quickly...and then you feel nothing apart from a little tugging sensation and the metallic taste of a little blood. Small swelling and a couple of stitches and it’s done. Don’t worry at all. I am a completely squeamish and don’t like pain and It wasn’t painful Lx
I had one three years ago. Once the numbing wears off it hurt. The worst part was that I looked like someone had punched me in the mouth. I went to Walmart to buy something before going home. The cashier took one look at me and offered to give me the number for the battered women’s shelter. She was very relieved when I told her that this was a biopsy and not my husband beating me up 😀. But it was very sweet of her to try to help me. Results of biopsy took two or three days.
Hi Jasmine - I suspect I'm too late - and probably for good reason. I had one two years ago and found it very difficult. You will probably have had it by now. I found the procedure very distressing, something out of a horror movie - I mean could they climb in my mouth any further ;)!!. They took quite a large lump out for some reason and I had what looked like tapestry going on in there as a result. certainly not a couple of stitches. I suspect they'd never done it before but who knows... certainly would have suggested some training, considering how everyone else here has said it was for them. I too looked like I'd taken a punch for some weeks... or a very bad go at botox in my bottom lip/chin ;)! Very swollen ideed. I was in a bad way generally with the Lupus and still working in an extremely stressful job (am recentlye retired on ill health grounds) so I think for me I was already on the back foot. I could only eat soup and smoothies for the first week or so and then I was booked to go on a sailing trip and remember not even being able to eat the olives :(. So it was yoghurt and Mousaka city for me for two weeks (I was in Greece as you may have guessed). Anyway - I took ibuprofen and two paracetamol at the minute it was another 4hrs... I really should have gotten some codeine when I think about it. You must wash your mouth out with salted water after eating and first thing in am and last thing before bed - this was brilliant as seemed to help the pain for some reason.. but obviously ensures any food is dislodged and it gets disinfected. I think I used tcp too at one point as Im very prone to infection. Are you? My neutrophils were very low so I would have been fighting any infection (as per). So... hopefully your experience of this is as was for the others (maybe not Starbook!), and I was just very unlucky. I wished they'd warned me to get in some good soups as just wasn't thinking stright enough to guess that would be needed. Just keep taking the meds regularly even if you can only feel a little bit of pain starting after the first load.. as it can suddenly come on bad I found. If I can help at all any more, do let me known. All the best! D
Hi. I’m so sorry about your awful experience and thank you for your kind words.
Actually, you weren’t too late as I didn’t go through with the procedure. The Doctor informed me that I may never have feeling again in my lip and then went on to say that my blood test results were all back, so it would be better to discuss it with my consultant when I see him next week. She also said that nothing would change even if the biopsy results were positive and I would continue with my medication as it is. One of the nurses said that if she were me, she wouldn’t go ahead. My partner was with me and had been adamant that I needed the biopsy, however, after listening to all of the advice, he did not want me to go through with it either.
Hope you’re having a good day.
Jasmine 😊
in reply to Jasmine22
Jasmine I too was told by a max fax that a lip biopsy could cause some numbness and there was no treatment so I pulled out of getting it done in 2015.
It wasn’t until the following year when I’d relocated and had immunology blood markers clearly pointing most to Sjögren’s despite being seronegative - that I was persuaded to have one. The consultant who talked it through with me is my oral medicine consultant at the university dental hospital.
She explained very carefully that there was a small risk that I may be left with some lasting numbness on the relevant part of the lip. But she didn’t exaggerate this as the whole lip or put me off at all. She explained that this risk is small and that this was the only definitive diagnostic test that could confirm Sjögren’s as my specific bloods were negative/ normal. She said that, although I already had a diagnosis of secondary Sjögren’s/ sicca Syndrome due to previous RA diagnosis - this was be the only way I’d be diagnosed formally and offered further immunesuppression etc if I wanted it. By this time I’d been undiagnosed with RA.
I’m so glad she’s one of my consultants and that I listened to her. But this is me - my lips had already been badly affected by a sun damage related condition and neuropathy by then anyway so I had less to lose from a bit of numbness - which I never suffered anyway.
I really hope your rheumatologist has good advice based on your latest blood results and I think it’s always best to make an educated decision. Each of us has our own unique reasons for making decisions about any investigation of course. But please don’t be swayed by subjective, ill informed and highly emotive comments - or assume that the risk of numbness is high.
If a doctor warns you off this procedure then they may well not be the best person to perform it. Perhaps their track record for performing lip biopsies isn’t high or they don’t know enough about present or possible future systemic treatments for Sjögren’s.
Dr Liz Price is an eminent rheumatologist (president of the BSR) who performs these often herself I believe. Here she is speaking about the UK guidelines for Sjögren’s treatments and about educating general rheumatologists, GPs and others about the need for earlier diagnosis and treatment than presently exists. youtu.be/GG3qxAvOVyc
I couldn’t agree more Pippa! After being told that I may lose all sensation in my lip on a permanent basis, I decided that it just wasn’t the path I wanted to take 😳😃
Awww, thank you! Take care 😁 xx
Sorry - I know that people can have horrible experiences of lip biopsies similar to dentistry or any invasive procedure. It depends entirely how desperate for clarity we are and how skilled the person performing it is. I always check out my doctors and dentists if I can so probably a good idea to ask how many times the person has performed this procedure.
It was was first time for my young dentist and the oral medicine surgeon hung over her telling her what to do. She did it really well thankfully and the Italian doctor watching and guiding her had done many herself in Italy.
My Sjögren’s mimicked RA, then MS, now Lupus. I opted out of lip biopsy at last minute just as Jasmine has done first time round. But I had it done a few years on when I really needed to know what was wrong with me.
I do think this is an easy thing to say “I’d never do this!” if you have a clear diagnosis of Lupus or RA already. In which case Sjögren’s may come after and just be part and parcel of your autoimmune mix. You don’t need a biopsy then.
However many go undiagnosed with primary Sjögren’s - which contrary to the myth doesn’t always present as just dry eyes or mouth but as it progresses it causes dryness everywhere leading to gastric problems, neuropathy, joint pain, organ involvement eg lung disease.
Just as some people have to get biopsies from face or kidneys to get their Lupus confirmed - some people with negative or inconclusive bloods find a diagnosis that meets the diagnostic criteria is very helpful.
For me personally I felt vindicated - after years of being told I had RA, then just wear and tear or chronic pain etc - when my lip biopsy came back 100% conclusive of Sjögren’s.
Schirmers only confirms dry eyes not Sjögren’s - which is always a systemic disease. The main treatment if you are diagnosed formally is same as Lupus ie Hydroxichloraquine. Many can only access this if they have a diagnosis made by either blood tests or lip biopsy.
I don’t make up the diagnostic criteria or work out criteria for eligibility for clinical trials. I was misdiagnosed with RA for four years because of symptoms and high inflammation levels so for me clarity was very important and diagnosing by symptoms alone doesn’t help increase understanding of these diseases.
Mine didn’t show in antibodies or ultrasound of parotids or large salivary glands and even my Schirmers was normal although other optician tests showed very dry eyes. My secretions look normal although I know they are not. It’s about quality as much as quality. My lip biopsy showed 100% infiltration of lymphocytes so I’m now taken pretty seriously by those who understand Sjögren’s.
For those with seronegative SS it can present very similarly to MS so histological clarity is needed to be sure. Quite a few are misdiagnosed with MS and given the wrong treatment.
All I can say is that for me the procedure was minimally invasive and certainly it isn’t disfiguring for more than a day or two?! It’s taken from inside the lip. Heck I’m having to apply chemo cream to my lip for a precancerous patch and this is far more unpleasant!
I’ve had far more horrible and invasive procedures to rule out MS eg lumbar puncture (which went wrong). And I know Sjögren’s to be a serious and under diagnosed AI disease, sometimes warranting the small risks of numbness from this procedure if they want to be formally diagnosed, just as some feel they are prepared to have kidney or skin biopsies for lupus.
You wouldn’t find many doctors prepared to diagnose SLE on symptoms alone so why expect Sjögren’s to be? Many things can cause dry eyes and mouth.
Anyway, like it or not, this is how it is unless your Sjögren’s is secondary to RA, Lupus or Scleroderma. The lucky ones can be diagnosed by symptoms and positive blood work antibodies Ro & La. Otherwise, according to international diagnostic criteria, seronegative (primary) Sjögren’s can only be diagnosed by lip biopsy.
Apparently it is possible to predict someone’s likelihood of getting lymphoma from lip biopsies.
So saying that it’s not worth having this test performed to me seems rather like saying that Sjögren’s isn’t a systemic disease worth correctly diagnosing and treating?
Phillippo thanks but I have had a biopsy and know all of this well so you are replying to the wrong person! It’s Pippa999 you should be replying to as she asked this question you are quoting from not I.
From this NHS Sjögren’s link you have posted here, exactly describing this so-called “invasive surgical removal” - ie the lip biopsy - one of the main methods of diagnosing Sjögren’s if bloods are normal but symptoms persist:
“If the layer of tears is very patchy, it could be a sign of Sjögren's syndrome.
Removing a piece of lip tissue
In people with Sjögren's syndrome, clumps of white blood cells, which are produced by the immune system, can form inside the cells where spit (saliva) is produced.
To check for this, a very small piece of tissue from the inside of your lip may be removed and looked at under a microscope. This is known as a lip biopsy.
Local anaesthetic is injected into your lip to numb it for the procedure.”
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