Plaquenil Helped me a lot I also use biotene mouthwash, dry mouth spray, and toothpaste. All help. I also use a high-fluoride prescription toothpaste prescribed by my dentist and have more frequent cleanings to prevent dry-mouth cavities. All together, my dry-mouth symptoms are greatly improved. I have Mixed connective tissue disease with mainly sjogrens symptoms.
I have connective tissue disease (ehlers danlos) with Sjogrens running in my family. Did the plaquinel help your burning mouth specifically or just the dryness?
It’s most likely small fiber neuropathy which is probably autoimmune. Have you had any autoimmune lab work done? Do you experience any other neuropathic pain?
Yep we did those from the beginning with the legit Chinese diameter needles and all the other points in the study. I’m so happy it worked for you though, thats great. I went for about 10 weeks and then gave up. I also have small fiber neuropathy with affects my whole body but the burning mouth was and continues to be the worse of it. Had it about a year. Was there anything else you did in addition to the acupuncture that may have helped?
Sorry, nothing else specific to BMS was done. Previous to the acupuncture, different docs had prescribed various things, none of which worked, and some made it worse, like steroid mouthwash. Something that I had already been doing, which helped my oral Lichen Planus, was switching to a toothpaste without sodium laurel sulfate. Pronamel and Parodontax started it, but now Crest and Colgate have versions, and there are others. Don't know if it could help BMS, but it was in a similar timeframe for me.
I have connective tissue disease (ehlers danlos) with Sjogrens running in my family. Did the plaquinel help your burning mouth specifically or just the dryness?
My burning mouth, tongue, and tooth was finally diagnosed as silent reflux and Barrett’s. Treatment with PPI drug ( Nexium) high dose twice daily, sucralfate liquid 4 times a day and baclofen and occasional use of pepsid complete has given me so much relief from the burning it’s unbelievable after suffering over 3 years. Healing was not fast. Took a good 30 days of treatment to start seeing improvement in the burning. 2 months of treatment I was able to dose down and then stop taking pain pills and pregabalin. I am now 4 months into treatment. Of course I am following all reflux lifestyle choices regarding upper body elevation when sleeping, I don’t drink or smoke, I don’t eat late, I only eat small meal, no spice, no cokes, no fatty foods, etc. silent reflux and Barrett’s surprised me. My body is so relaxed now that I don’t have to tolerate so much burning mouth.
My burning mouth, tongue, and tooth was finally diagnosed as silent reflux and Barrett’s. Treatment with PPI drug ( Nexium) high dose twice daily, sucralfate liquid 4 times a day and baclofen and occasional use of pepsid complete has given me so much relief from the burning it’s unbelievable after suffering over 3 years. Healing was not fast. Took a good 30 days of treatment to start seeing improvement in the burning. 2 months of treatment I was able to dose down and then stop taking pain pills and pregabalin. I am now 4 months into treatment. Of course I am following all reflux lifestyle choices regarding upper body elevation when sleeping, I don’t drink or smoke, I don’t eat late, I only eat small meal, no spice, no cokes, no fatty foods, etc. silent reflux and Barrett’s surprised me. My body is so relaxed now that I don’t have to tolerate so much burning mouth.
I had finally gone to emergency room for the hot burning mouth. The PA was pretty sharp! She treated me and stopped the burning with a recommendation I see a gastrologist to get an esophagus scope which I did. My doctor and the gastrologist didn’t have high hopes for stopping the burning prior to procedure. After the diagnosis of silent reflux and Barrett’s, with reflux needing treatment, it was trial to see if reflux treatment would stop the burning mouth/tongue. After about 3 weeks of treatment I noticed the extra dose of sucralfate in the middle of the night was stopping the burning. I kept taking medicine prescribed and within 30 days I was having a lot less burning. Recovery is not quick.
I had finally gone to emergency room for the hot burning mouth. The PA was pretty sharp! She treated me and stopped the burning with a recommendation I see a gastrologist to get an esophagus scope which I did. My doctor and the gastrologist didn’t have high hopes for stopping the burning prior to procedure. After the diagnosis of silent reflux and Barrett’s, with reflux needing treatment, it was trial to see if reflux treatment would stop the burning mouth/tongue. After about 3 weeks of treatment I noticed the extra dose of sucralfate in the middle of the night was stopping the burning. I kept taking medicine prescribed and within 30 days I was having a lot less burning. Recovery is not quick.
At times I did have a metal taste in my mouth. In the beginning I had gotten 3 new crowns. My burning started after that. I tested for allergies and was allergic to a material used with crowns. I replaced the 3 crowns only dentist still used material I was allergic to. I continued to burn so I had all 3 crowns replaced again. I kept burning. I then had a root canal and was told I did need the root canal after being told for 3 years I did not. Burning continued. I decided to have the burning tooth pulled and sent for analysis. I had 12 different kinds of bacteria. Took antibiotics. Burning continued. I fought hard to find answers. Finally a Dr at emergency room got my burning to stop and that’s when I got the esophagus scope at her recommendation. I did find that gabapentin increased the burning. Pregabalin caused other burning at other areas on body. Pain pills worked to reduce the hot burning but that only lasted so long. You might talk to your dr about trying a reflux treatment with PPI and coating esophagus with sucralfate just to see if after 30 to 45 days you see improvement or ask Dr about trying Pepsid complete chewable tablets OTC. My family Dr had no faith that treating reflux would stop my burning but he is happy it did work. The metal taste in mouth is the worst. Have you had any new dental work done? I read every article I could find trying to find answers. Good luck!
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I have connective tissue disease (ehlers danlos) with Sjogrens running in my family. Did the plaquinel help your burning mouth specifically or just the dryness?
It’s most likely small fiber neuropathy which is probably autoimmune. Have you had any autoimmune lab work done? Do you experience any other neuropathic pain?
Sorry, nothing else specific to BMS was done. Previous to the acupuncture, different docs had prescribed various things, none of which worked, and some made it worse, like steroid mouthwash. Something that I had already been doing, which helped my oral Lichen Planus, was switching to a toothpaste without sodium laurel sulfate. Pronamel and Parodontax started it, but now Crest and Colgate have versions, and there are others. Don't know if it could help BMS, but it was in a similar timeframe for me.
Only the dryness. Thank God I never had burning mouth.
Not sure if this helps but my doctor believes this is a Vitamin D deficiency so my mum started taking vitamin D and hasn't had a problem since.
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1 ReactionMy burning mouth, tongue, and tooth was finally diagnosed as silent reflux and Barrett’s. Treatment with PPI drug ( Nexium) high dose twice daily, sucralfate liquid 4 times a day and baclofen and occasional use of pepsid complete has given me so much relief from the burning it’s unbelievable after suffering over 3 years. Healing was not fast. Took a good 30 days of treatment to start seeing improvement in the burning. 2 months of treatment I was able to dose down and then stop taking pain pills and pregabalin. I am now 4 months into treatment. Of course I am following all reflux lifestyle choices regarding upper body elevation when sleeping, I don’t drink or smoke, I don’t eat late, I only eat small meal, no spice, no cokes, no fatty foods, etc. silent reflux and Barrett’s surprised me. My body is so relaxed now that I don’t have to tolerate so much burning mouth.
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1 ReactionThat’s great news! So glad you’re feeling better. How were you tested?
I had finally gone to emergency room for the hot burning mouth. The PA was pretty sharp! She treated me and stopped the burning with a recommendation I see a gastrologist to get an esophagus scope which I did. My doctor and the gastrologist didn’t have high hopes for stopping the burning prior to procedure. After the diagnosis of silent reflux and Barrett’s, with reflux needing treatment, it was trial to see if reflux treatment would stop the burning mouth/tongue. After about 3 weeks of treatment I noticed the extra dose of sucralfate in the middle of the night was stopping the burning. I kept taking medicine prescribed and within 30 days I was having a lot less burning. Recovery is not quick.
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1 ReactionThat’s amazing! What a relief I’m sure. I dream that one day I won’t have my constant bitter taste. It’s difficult to keep up hope.
At times I did have a metal taste in my mouth. In the beginning I had gotten 3 new crowns. My burning started after that. I tested for allergies and was allergic to a material used with crowns. I replaced the 3 crowns only dentist still used material I was allergic to. I continued to burn so I had all 3 crowns replaced again. I kept burning. I then had a root canal and was told I did need the root canal after being told for 3 years I did not. Burning continued. I decided to have the burning tooth pulled and sent for analysis. I had 12 different kinds of bacteria. Took antibiotics. Burning continued. I fought hard to find answers. Finally a Dr at emergency room got my burning to stop and that’s when I got the esophagus scope at her recommendation. I did find that gabapentin increased the burning. Pregabalin caused other burning at other areas on body. Pain pills worked to reduce the hot burning but that only lasted so long. You might talk to your dr about trying a reflux treatment with PPI and coating esophagus with sucralfate just to see if after 30 to 45 days you see improvement or ask Dr about trying Pepsid complete chewable tablets OTC. My family Dr had no faith that treating reflux would stop my burning but he is happy it did work. The metal taste in mouth is the worst. Have you had any new dental work done? I read every article I could find trying to find answers. Good luck!
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