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← Return to Erosive oral lichen planus
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@bebold Hi! Thank you for the information. As of today I am on 1.5 mg(made at a local compund pharmacy) and I take in the am with food which seems to help with the side effects (ridiculous constipation). My Dr. was out of town for the holidays so I am waiting to hear back if he wants me to go down to 1 mg. I did like taking it at night but its just too hard on my stomach. I am sticking with it as long ass I can work out the kinks because I can see my mouuth is healing not just calmed down but actually healing and I really want to put this into remission. I wanted to try the troche but it turns out they make it with citric acid and thats a trigger for me. Do you have oral lichen planus? Are you in remission and still on LDN? Thanks you for the feed back!
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@zinnia55 I do. I wrote here about recently having a tongue biopsy. A scary thing and was my 2nd of 3 biopsies this year. Thank god Breast and Tongue were negative. 3rd 2 weeks ago was biopsy for basal cell which could be more extensive MOHs surgery in April.
You know how there gets to be sooo much going on medically that it gets easier to ignore some of it? It was the oral medicine person who told me I needed to get the thing on my face checked. I have the erosive type. I've been on LDN for a long time (with some breaks for surgery/pain meds.) I rarely have a day without a sore somewhere in my mouth. I am having all my top teeth removed next week, this condition and a few other autoimmune issues (CRPS) have taken their toll. I've wondered tho if having fewer fillings will help. I'm very allergic to nickel, who knows how much is in old fillings.
So you are having issues. I want to suggest - if you have a dairy allergy, and whey is a filler being used in manufacturing, or by the compounding pharmacy you use, that can cause your belly issues.
Or the same with gluten. Gluten is also used as a filler.
Worth checking out. Sadly, because what we get for generics every month changes (whatever is cheapest for the pharmacy's middle man) we can't control month to month what filler is used. I can talk your ear off about the issues with generics, but finding a pharmacy that uses high quality product (I think cold pressed?? - or not, I forget) is key. When I find a manufacturer with the right filler, I have ny dr put that manufacturing company as a must on the script. Then I shop around for the local pharmacy that can get that manufacturer. There are some I just avoid or do much research on. Teva and Sun manufacturing (in india) plants are usually not good depending on the generic.
This is what happens when we get a different say blood pressure meds and every month its a different manufacturer. Our blood pressure can be overtreated one month and undertreated the next.
Like I said, don't get me started on what we don't kniw about our generic meds.
Check whey or gluten filler if you have a sensitivity? I've not seen many with belly issues with LDN - esp at such a low dose? Glad you have an informed doc.
My best