Sjogrens biopsy

[MrGrey1234]

I was diagnosed with lupus 4 years ago, I have also been having a lot of symptoms of sjogrens, my Rhumatologist has done the usual bloods, and now is referring me for lip biopsy, has anyone had this, and, did it give a definite answer, TIA

[Hidden]

Hello MrGrey. I haven't heard anything about having a lip biopsy to confirm diagnosis. I thought they would just prescribe what you need to relieve symptoms! I use eye drops when needed.Hope you get sorted x

[pattypatchwork]

Hi, I also have symptoms of both lupus and sjogrens but have not had the biopsy you mention. My rheumatologist says that the treatment for them both is basically the same anyway. I use eyes drops when my eyes feel dry and such sweets when my mouth does. You find what works for YOU to help you deal with it. I am now also uva sensitive which creates a whole new lot of symptoms and adaptions to how you live your life

[sarahsch]

Hi, I had a lip biopsy last year. In my case they found the cells they were expecting for SS, but not enough to make diagnosis 😕 ( I think that was how it was explained to me).

I have undifferentiated CTD so in my case it made sense to go for lip biopsy to see if I fitted a diagnosis of primary SS. I share Sylvester66's surprise. If you have a lupus diagnosis, they will usually diagnose secondary SS from symptoms alone.

Regarding the biopsy itself, it was like a dental procedure. They numbed the area. I didn't feel anything just a bit of tugging. The lip was stitched loosely & they dissolved & fell out in about a week. A little sore at first but not painful. I drank through a straw to keep the wound as clean as possible. No loss of feeling for me, although there is a risk of this. All in all went well for me.

Best of luck,

Sarah x

[OldTed60]

Had this and in my case it was definitive for Sjogrens. Now have positive systemic sclerosis too so overlap syndrome. Treatments are same for all but think I was told that they sometimes find other cellular things in lip biopsy such as lymphoma if they are looking for this but maybe wrong. No regrets in my case but it depends why your consultant wants this done. People can only take part in some Sjogrens treatments trials if lip biopsy positive I think.

[mudglutton]

Like everyone else, I was diagnosed with Sjogrens, have the treatment (eye drops), never had a biopsy. Sounds odd!

[MrGrey1234 in reply to mudglutton]

I have all the symptoms of sjogrens, dry eyes and mouth , blisters in my mouth, and sore roof of mouth, but Rhumatologist won't give me a diagnosis till he has done biopsy x

[Whippet_lady in reply to MrGrey1234]

Sore roof of mouth? I had this after my lupus was first diagnosed. Nobody knew what it was or how to treat it. It was agony. I now take calcium folinate (not folic acid), apart from my methotrexate day, to ease it. I didn’t know it was a symptom of sjögrens - and obviously neither did my rheumy. I also have dry eyes, dry skin on my hands, elbows and feet and extremely dry lips. Not my mouth, though. Well, most of the time.

[Haired]

Hi Mc Grey,

I also have Lupus and Sjogrens. I was attending a dermatologist for skin lupus.she completed a skin biopsy which confirmed lupus diagnosis. I was referred to rheumatologist who arranged for Lip Biopsy. Same as Sarah, no problem with biopsies. Rheumatologist did say even if test came back negative did not mean I did not have conditions. Very hard to diagnose he said can take up to 8 years.

I was on Mepacrine a malaria medication to start with which I found very good. Cleared up the chronic mouth ulcers.Now on Rituximab Infusions for both Lupus and Sjogrens plus maintenance steroids.(had tried many medications before starting rituximab.) Like Pattypatchwoek photo sensitivity has become very difficult in the past 12 months. We can all have different symptoms and it’s a matter of finding what helps you. Good luck

[Whippet_lady in reply to Haired]

Can I ask why you stopped mepacrine? I'm taking it and it helps massively with UV sensitivity.

[Haired in reply to Whippet_lady]

Hi, My 10 month experience with Methotrexate was not good but remember this medication works well for lots of people. I took it once a week to start with. I felt very fatigued and nausea for two days which I was told was normal enough. But by 10 months I had symptoms 7 days a week and was exhausted by the time I got dressed in the morning.

For me it was not worth taking as my Lupus and Sjogrens symptoms had not improved sufficiently. Consultant changed medication at that stage.

Just remember it works really well for lots of people. Good luck.

[Whippet_lady in reply to Haired]

Methotrexate or Mepacrine? Sorry, I'm a bit confused. It was Mepacrine, which you said was very good, that I was asking about.

[Haired in reply to Whippet_lady]

Hi, I had a stroke in Jan 2020 just before COVID broke out. I was taken off all medication until they were happy medication had not caused Stroke. I was put back on Methotexrate & Mepacrine for a while but once I started Rituximab they decided not to continue with Mepacrine. I am due to see rheumatologist in June will mention it to him. Thank you for your reply. X

[Whippet_lady in reply to Haired]

Oh, I'm sorry to hear that. That must have been a worry, wondering if taking meds would contribute to making things worse! I'm guessing the methotrexate and mepacrine weren't working as well afterwards which is why you went onto rituximab? My rheumy had never heard of mepacrine, it was my dermatologist who put me on it. It seems to have worked wonders for my rashes, which nothing else did, and helped with uv problems too. I still need the factor 50 to be on the safe side but I don't need to hide indoors with the curtains closed any more.I hope you find all the right solutions for you. 🤗

[Haired in reply to Whippet_lady]

Hi, The reason Rheumatologist changed Methotrexate was because I told him I could not take the side effects any more (had tried it for about 10 months). I went on Imuran after that but unfortunately it caused liver damage quite quickly. (You have weekly blood tests so notice very quickly). At that stage went on Rituximab that was when I was taken off Mepacrine.

Just received my UV long sleeved Top in the post so hopefully that will help. Thank you so much for your contacts.

Regards Marian

[Chris21]

I haven’t had a lip biopsy, could it be like some have said that they are looking a bit more in depth? I’ve lupus sle and at one of my rheumatology appointments he said he thought I might have an overlap for sojgrens and diagnosed it by using a special paper in my eyes. If I’d been offered a lip biopsy, I would’ve taken it.

[Krazykat26]

I was diagnosed with Sjogrens following positive RO and LA blood results and a shrimer(?) test. Not sure about the spelling there but my rheumy put a small bit of litmus paper in the corner of my eyes n then in the dip under my tongue. The result was scanty saliva n tears and I was diagnosed on that basis. There was no need for lip biopsy in my case. 💜🌈Xx

[chrisj]

Had a biopsy at our dental hospital a few years ago that came back positive for Sjogrens so yes it gave the definitive answer the doctor was looking for. It was all about testing for saliva levels as two of my saliva glands are drying up and have been for some time.