Results of lip biopsy

Posted , 9 users are following.

After years and years of searching for an answer, a person in a support group for chronic pain suggested I might have Sjogren's syndrome. So two weeks ago I finally got the lip biopsy done. And I was definitely not expecting the results that I got. The lab said that it was inconclusive. I had some evidence of Sjogren's syndrome But not enough to make the firm diagnosis. I wondered if anyone else here has ever had that happen.

Regardless of a positive Sjogren's test or not I have horrible dry eyes and horrible dry mouth. I also suffer from chronic pain so any muscular or joint pain that I might get with Sjogren's would be masked by my other conditions and treatments for my chronic pain. My rheumatologist is treating most of my symptoms (dry mouth meds) my eye doctor is treating my dry eyes with Restasis and finally I'll have to talk to my dentist about my teeth.

I do want to say how frustrated I am with the medical community in my city. I have complained to everybody Under the Sun about my dry mouth and dry eyes and no one ever mentioned the combination and the connection was Sjogren's. And I've recently discovered on my own why my tongue is so sensitive. Apparently I get thrush a lot and that's because of two things: # 1 I have a dry mouth which can cause thrush and because it's a dry mouth it often won't show the white splotches. So I went untreated with thrush for several years and # 2 I take prednisone on a daily basis plus I use a steroid inhaler which can cause thrush in any condition.

I would love to hear some suggestions and/ or advice on where to go from here.

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  • Posted

    Amkoffee how were you finally diagnosed with thrush if it doesn’t show up with dry mouth? I feel I have this everywhere but doctors and dentists look in my mouth and say no sign of thrush? Currently I am using athletes foot cream for fungal infection under my breasts and onto my abdomen. I feel this is system wide but my doctors don’t seem to grasp this at all? 
    • Posted

      Doctors can be so frustratingly ignorant. How I found out is really by chance and it's not a way you want to do. I had to have a sore biopsied on my tongue and the oral surgeon that did it ask the lab to also check for a fungal infection. I did not have cancer thankfully but they did find a fungal infection. They did not go any further to identify what kind of fungus it was but since I used to get chronic yeast infections before my hysterectomy and now I also get rashes like you do and it is successfully treated with athlete's foot medicine (lotrim). This seemed obvious that what I had in my mouth was thrush. But like I said I had absolutely no white splotches. Well the oral surgeon treated my thrush and I noticed that after it was treated the burning of my tongue when I ate was almost all gone. So I started doing some research on Doctor Google where I discovered that the white splotches don't show up with people who have dry mouth. I confirmed that case just recently when my tongue started to burn again when I ate. I had already asked my GP to write me a prescription for thrush and since I didn't have any of the white splotches he refused. So I then remembered that my oral surgeon had called in a refill on my thrush medicine from before so I filled it. I have just finished my prescription and you'll never guess...but my tongue doesn't burn anymore. So this just confirms that I had another case of thrush without the white splotches. One thing that the article mentioned was that your tongue and the inside of your cheeks would be red. I haven't noticed it in my mouth though. As far as I can see it looks normal. I would suggest that you try going to a dentist and asking him or her to treat you with thrush medicine to experiment. Most doctors and dentist treat thrush with a drug called Nystatin. But my oral surgeon prescribed something that I thought was much more palatable and not as gross to take. It's called clotrimazole 10 mg. They are round tablets also called troches that you suck on until it's dissolved. You do that 5 times a day for a week. I wish you luck on finding someone to prescribe it to you. It's very frustrating when doctors refuse to treat something that is so easily treated and not even with medication that is dangerous. If you're not taking a bunch of medication like I am you could ask for Diflucan which is a tablet you swallow and I'm thinking it's just one pill. It is good for yeast infection and it will also cure thrush as well. It does however conflict with a lot of other different medication. But your pharmacist can fill you in on that. I'll take a look and see if I saved that search that I did on Google and if I can find it I'll post it in another comment.

    • Posted

      Unfortunately I’m on lots of medications too, including max dose of an immunesuppressant called Cellcept for my autoimmunity/ Sjögren’s and also on Thyroid med and stomach meds and Losartan for my BP and Raynaud’s.  I did ask the doctor for something more systemic than cream but he didn’t want to risk it as said it can affect liver and worsen the fungal infection because it contains steroids. So I’m treating the vagina thrush and fungal infection of skin with creams only. 

      I have my first gastroenterology appointment tomorrow so am going to ask her about Candidiasis as a possible contender. Thanks! X

    • Posted

      I'm surprised that a med that clears up thrush has a steroid in it because steroids causes thrush. I'd check that out with your pharmacy. But the first one I mentioned should work for you.

    • Posted

      I’m thinking the gastro tomorrow will be a good person to ask about this because I’ve googled her and her first degree was in immunology and she’s also a general medicine doctor - PhD in probiotic cultures so hopefully (and I’ve grown very wary over the years) she will be the perfect person to ask. 
    • Posted

      Maybe you need to save that hyperlink so that you can get to it quickly. That way you'll have something to back up your request.

    • Posted

      Thanks I’ve saved it. Will discuss but I suspect she will say same as the vascular doctor and my rheum - that it’s all Sjögren’s related autonomic dysfunction ie neuropathy related. Thrush is common in Sjrogens and so I’ll defintely mention as I’m guessing she will see the fungal infection under my boobs when she examines me. 

  • Posted

    Here is the link.

    https://patient.info/health/oral-thrush-yeast-infection

    • Posted

      This is just a brief note to amkoffee, or anyone who has spoken here, about what I do for oral thrush.  I also was found to have a mass of it at the base of my oesophagus in 2005 during an endoscopy and was given something to swill in my mouth and swallow for a week or so but it contained sugar and I was not happy to stay on it.  I live in Melbourne, Australia, and see an oral medicine specialist at a dental hospital every six months.  She checks my mouth for all the non-teeth effects of a Sjogren's-related dry mouth including thrush.  For over a decade I have received scripts there for Fungilin (amphotericin B) lozenges and suck one of these each night and despite the dryness increasing inexorably I have not had a mouth episode of thrush since.  This medication may not be available in the UK as I seem to remember seeing, a number of years ago, that it had been withdrawn - I was not able to find out why - but I thought I would put the note in here anyway, as it may be of value to someone.  Fungilin is available here only on script.

    • Posted

      My oral surgeon treated my thrush with lozenges and they worked so well and they tasted good kind of. Nothing like the liquid you Swish and swallow. I just grosses me out to have to swallow it. Yuck!

      But when I asked him if there was something I could take prophylactically he said there wasn't. So I don't know if the lozenges you take once a day is the same as the one I used to get rid of my thrush.

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