Erosive oral lichen planus

Posted by germany2 @germany2, Mar 20, 2017

Hello
I’m new to the group. I was diagnosed with erosive lichen planus 4 years ago and it has been a nightmare since. Mine has progressed from my mouth to my esophagus, nose and eyes. I’ve seen so many doctors @ Vanderbilt and St Thomas Hospital who have no idea how to treat my illness. I’ve. Even advised to go to the Mayo Clinic in Rochester but I’m really not sure what doctor or doctors have experience with treating this disease. Any help would be appreciated
Thanks

Liked by fancyrph

@fancyrph

I was on a small dose of prednisone for a year that didn’t help one bit. Then got osteopenia in lower spine from it. I’ve taken a Medrol dosepak several times. I think initially I got some minor relief. Stopping the NSAID MOBIC made all the difference in the world. Have a lot less pain now.

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@fancyrph What is MOBIC? Thanks for defining.

@jshdma

@fancyrph What is MOBIC? Thanks for defining.

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@jshdma, MOBIC (meloxicam) is a nonsteroidal anti-inflammatory drug (NSAID).

https://www.rxlist.com/mobic-drug.htm

@jshdma

@fancyrph What is MOBIC? Thanks for defining.

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MOBIC is the brand name for a non-steroidal anti-inflammatory drug (NSAID) meloxicam. Similar to ibuprofen/Motrin or Advil over the counter or Naproxen. NSAIDs have uses for a many different types of pain such as arthritis, dental pain, pms, etc but are not without adverse side effects.

@fancyrph

MOBIC is the brand name for a non-steroidal anti-inflammatory drug (NSAID) meloxicam. Similar to ibuprofen/Motrin or Advil over the counter or Naproxen. NSAIDs have uses for a many different types of pain such as arthritis, dental pain, pms, etc but are not without adverse side effects.

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@fancyrph @johnbishop thanks for clarifying. This is one I had never heard about.

@fancyrph

MOBIC is the brand name for a non-steroidal anti-inflammatory drug (NSAID) meloxicam. Similar to ibuprofen/Motrin or Advil over the counter or Naproxen. NSAIDs have uses for a many different types of pain such as arthritis, dental pain, pms, etc but are not without adverse side effects.

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@jshdma So the MOBIC made the lichen planus worse?

It made the erosive lesions worse & ultimately the lichens planus. I could not even touch my face without pain or going through the roof. The pain at least was much better & tolerable after stopping the NSAID meloxicam. It is a very powerful drug.

@fancyrph Do you think it was the powerful MOBIC or the fact than all NSAIDs can have this effect to some degre? I ask this because I felt something similar with mouth irritation and NSAIDs.

@alpaca

@fancyrph Do you think it was the powerful MOBIC or the fact than all NSAIDs can have this effect to some degre? I ask this because I felt something similar with mouth irritation and NSAIDs.

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I believe all NSAIDS can cause this due to their mechanism of action. MOBIC is once a day, so longer acting & probably builds up over time, taking longer for the body to clear it out also. Bigger risk for these side effects.

@alpaca

@fancyrph Do you think it was the powerful MOBIC or the fact than all NSAIDs can have this effect to some degre? I ask this because I felt something similar with mouth irritation and NSAIDs.

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@cheryl5578 mentions her experience with NSAIDS in an earlier post.

I have oral like in planus following a stem cell transplant. Or use a combination of swish and spit dexamethasone (steroid) and Nystatin for yeast because the steroids can create yeast growth. Because I don’t swallow the steroid, I don’t get the impacts on my whole body, just my mouth. I also drink a lot of water all day. I find iced water keeps inflammation and pain down. It has all helped keep the lichen planus controlled and I don’t get so many erosive episodes. I rinse twice a day with the dexamethasone, up to four times when I have a flair. Or use the nystatin as needed when I get a used bloom. Hope this helps someone.

@ckeys

I have oral like in planus following a stem cell transplant. Or use a combination of swish and spit dexamethasone (steroid) and Nystatin for yeast because the steroids can create yeast growth. Because I don’t swallow the steroid, I don’t get the impacts on my whole body, just my mouth. I also drink a lot of water all day. I find iced water keeps inflammation and pain down. It has all helped keep the lichen planus controlled and I don’t get so many erosive episodes. I rinse twice a day with the dexamethasone, up to four times when I have a flair. Or use the nystatin as needed when I get a used bloom. Hope this helps someone.

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What kind of stem cell transplant? Joints? Knees? or other type? Please reply!

@ckeys

I have oral like in planus following a stem cell transplant. Or use a combination of swish and spit dexamethasone (steroid) and Nystatin for yeast because the steroids can create yeast growth. Because I don’t swallow the steroid, I don’t get the impacts on my whole body, just my mouth. I also drink a lot of water all day. I find iced water keeps inflammation and pain down. It has all helped keep the lichen planus controlled and I don’t get so many erosive episodes. I rinse twice a day with the dexamethasone, up to four times when I have a flair. Or use the nystatin as needed when I get a used bloom. Hope this helps someone.

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@ckeys To whom it may concern: I have been reading about oral LP and burning mouth syndrome over months (years?) in many comments on this site. I can only conclude that there is no (satisfactory) treatment for these conditions, and certainly no cure. I also get the impression that doctors hardly know of these problems (which can be terrible) and cannot do anything. In a day when they do solve incredibly difficult problems deep inside the body, it is hard to believe that OLP and BMS, right there to be seen, have no solutions.

@skaryna

What kind of stem cell transplant? Joints? Knees? or other type? Please reply!

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Whole body, complete autologous and allogeneic for lymphoma. Not a stem cell injection, a transplant. I now have my sister’s blood type.

Liked by becsbuddy

@jshdma

@ckeys To whom it may concern: I have been reading about oral LP and burning mouth syndrome over months (years?) in many comments on this site. I can only conclude that there is no (satisfactory) treatment for these conditions, and certainly no cure. I also get the impression that doctors hardly know of these problems (which can be terrible) and cannot do anything. In a day when they do solve incredibly difficult problems deep inside the body, it is hard to believe that OLP and BMS, right there to be seen, have no solutions.

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@jshdma I don't think there is a cure for autoimmune diseases. As far as I know lichen planus is such a disease. From what I can see here the combination of the dexamethasone mouthwash and nystatin sounds like good advice. I acknowledge that these conditions are just plain awful.

@alpaca

@jshdma I don't think there is a cure for autoimmune diseases. As far as I know lichen planus is such a disease. From what I can see here the combination of the dexamethasone mouthwash and nystatin sounds like good advice. I acknowledge that these conditions are just plain awful.

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@alpaca There may be no cure for autoimmune diseases, but there are some adequate treatments for other conditions in this category (e.g., diabetes). The several doctors in my experience know nothing about these conditions (especially BMS), and want nothing to do with them. A top specialist in oral pathology in NYC told me there is nothing to do with BMS, it usually goes away by itself, except sometimes it doesn't. And so I was dismissed.

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