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@jeraberkana Hi yes the dermatologist gave me dexamethasone liquid as a swish and spit followed by tacrolimus ointment applied inside the mouth. I did this for about a month and it really started to lessen the disease in my mouth but the steroid side effects are not great either. So now I have been on low dose naltrexone 3mg per day for 21 days and it has helped soo much! I finally feel like there is hope, I also use the tacrolimus once a day and I bought a therpautic red light mouth piece of Amazon and I am up to 11 minutes a day. This is the best my mouth has been since May and I am hopeful in time it all goes away or I can stay on naltrexone long term. I have been on the LDN for 3 week and I am starting to have digestive issues so next week I am seeing if I can go to a sublingual form of the medication. I have also implemented a strict teeth brushing, flossing and rinse 3 x a day and a quick water swish after meals to keep it as clean as possible and I now go to the dentist evry 3 months. That has been helpful as well. So sorry abouth your tooth loss. Have you thought of seeing a dermatologist? Or look into low dose naltrexone see what your doctors say.
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@zinnia55 did you start LDN at 3mg?? That's way too high a dose, too fast which no doubt is the reason you are having issues. You have to start with a very low dose! I've done a deep dive in LDN, I've been on it for 6+ years and I studied it for a year before I went on it. I wish doctors who prescribed it knew more! Here's the regiment.
0.5 mg at night, x3 or 4 weeks.
1mg at night x2 weeks
1.5 mg at night x2 weeks.
2mg at night x2 weeks.
Then can go to 2.5 or 3 depending on your tolerance.
If you are having insomnia or lucid dreaming, go back down on your dose for a while.
You said you hoped you could be on it long term. LDN should only be used long term as it can take a long time to help. You can not take opioids when on LDN! (It renders opioids useless and will not help pain.) If someone can't go off of opioids, you can't take LDN.
Many times people feel like it's not helping after they've been on for 6 months or a year and you don't realize till you go off of it that it actually was helping. I don't feel it helps my OLP at all as I always have lesions in my mouth but I guess it could be worse?
If you are taking LDN in the morning with nausea, it's always best to take it at night anyway. The lowest amount you take and it helps, the better - usually 2.5 to 3.5 for a while before going up higher if you must. It works by having a very short halflife.
Side effects mostly only happen if the dosage is too high, too fast. Don't give up.
I hate that people don't have a good experience just because doctors don't understand how it works and how to prescribe it.
And its not a magic cure. Its an anti inflammatory. But it can be used for many conditions including parkinsons, some cancers etc. Its only fairly newly recognized as helpful with many disorders but LDN is always an off label use of Naltrexone 50 mg which is used for drug addiction. There are also very specific ways it needs to be prepared by a pharmacy who knows the medication powder and what country it is coming from. If someone is finding no value, it may be a bad manfacturer in India, China, Israel.
It is mostly used for chronic pain but its anti-inflammatory properties are helping autoimmune issues sometimes, like OLP.