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Lichen planus - Who uses Tacrolimus Ointment?

Posted by fdixon63 @fdixon63, Aug 18, 2023

Hi everyone. Not sure if I should post this question here or with Autoimmune disease group--maybe both. I've dealt with Lichen Planus for many years on the skin, gums, and vagina. I had to start seeing a new dermatologist as the doc I've used for 16 + years is retiring. Up to this point I've been prescribed clobetasol or betamethasone. I've had numerous squamous surgeries that I associate with LP. Unfortunately the doctors don't follow that line of assumption. Oh well. I saw the new derm yesterday and she gave me an "all over" exam. There were three biopsies, 3-4 frozen places and two other spots that she "zapped" with a tool that I've never seen before. There were other places that she said "might be lichen planus" and she did not do anything with them. When all this was done she prescribed Tacrolimus - apply twice daily. My new doc has a heavy accent and there was a lot said and done in the time I had with her. So... has anyone else used this ointment and how long did you use it and how did you determine that it is no longer needed? Sorry this is so lengthy but better to get enough info in to get the answers needed. Thanks much.

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Mentor
Lori, Volunteer Mentor | @loribmt | Aug 19, 2023

Good morning, @fdixon63. I’ve been using Tacrolimus ointment to treat an area on my tongue caused by an autoimmune reaction to a stem cell transplant. I use it 2 or 3 times daily and it is a great tool for calming and healing. My transplant doctor has me use it until the area is healed and then add a couple more weeks as a good measure. I’ve also been given Dexamethasone oral rinse (30 seconds then spit out) to use in conjunction with the tacro. Those two products have made a huge difference in keeping my mouth calm.

The same autoimmune condition brought about a little area on my leg that the dermatologist coined as granuloma annular. She told me to use the Tacrolimus ointment on that area and wow, it took care of the condition in less than a week. I was instructed to use it twice daily with just a small dab rubbed in. Once it’s healed, use it 2 more weeks after that and then stop. It worked like a charm. The area is healed and never returned.
So I’m expecting you’d be having similar instructions.

The amount I use at a time is smaller than the size of a pea if that helps. (On my leg it was about lentil size) It doesn’t take much. Think of it as a medicated Vaseline…a little goes a long way. Just rub it in really well for a few seconds and you’re good to go.

Tacrolimus is an anti-inflammatory medication and used for many applications such as pill, injection or IV form as an anti-rejection med for transplant patients. It also works very well when applied topically in an ointment to calm psoriasis, eczema, lichen planus, granuloma annular and a host of other skin conditions.
Prograf is the trademark name of tacrolimus. The ointment is often called Protopic.
There are quite a few references in the forum in various groups with members who use the tacrolimus/Protopic ointment.

I’ve posted one link below.

~Erosive oral lichen planus
Reply by @artist01 regarding her use of Protopic ointment
https://connect.mayoclinic.org/comment/633127/
From this dicussion on Erosive Oral Lichen Planus
https://connect.mayoclinic.org/discussion/erosive-oral-lichen-planus/
You can type any any of those words…Tacrolimus Ointment. Prograf Ointment or Protopic and a host of other conversations will pop up for you.

Hopefully this tacro ointment brings you some relief. I know it has worked miracles for me.

REPLY
1 reply
fdixon63 | @fdixon63 | Aug 19, 2023
In reply to @loribmt "Good morning, @fdixon63. I’ve been using Tacrolimus ointment to treat an area on my tongue caused..." + (show)
@loribmt

Good morning, @fdixon63. I’ve been using Tacrolimus ointment to treat an area on my tongue caused by an autoimmune reaction to a stem cell transplant. I use it 2 or 3 times daily and it is a great tool for calming and healing. My transplant doctor has me use it until the area is healed and then add a couple more weeks as a good measure. I’ve also been given Dexamethasone oral rinse (30 seconds then spit out) to use in conjunction with the tacro. Those two products have made a huge difference in keeping my mouth calm.

The same autoimmune condition brought about a little area on my leg that the dermatologist coined as granuloma annular. She told me to use the Tacrolimus ointment on that area and wow, it took care of the condition in less than a week. I was instructed to use it twice daily with just a small dab rubbed in. Once it’s healed, use it 2 more weeks after that and then stop. It worked like a charm. The area is healed and never returned.
So I’m expecting you’d be having similar instructions.

The amount I use at a time is smaller than the size of a pea if that helps. (On my leg it was about lentil size) It doesn’t take much. Think of it as a medicated Vaseline…a little goes a long way. Just rub it in really well for a few seconds and you’re good to go.

Tacrolimus is an anti-inflammatory medication and used for many applications such as pill, injection or IV form as an anti-rejection med for transplant patients. It also works very well when applied topically in an ointment to calm psoriasis, eczema, lichen planus, granuloma annular and a host of other skin conditions.
Prograf is the trademark name of tacrolimus. The ointment is often called Protopic.
There are quite a few references in the forum in various groups with members who use the tacrolimus/Protopic ointment.

I’ve posted one link below.

~Erosive oral lichen planus
Reply by @artist01 regarding her use of Protopic ointment
https://connect.mayoclinic.org/comment/633127/
From this dicussion on Erosive Oral Lichen Planus
https://connect.mayoclinic.org/discussion/erosive-oral-lichen-planus/
You can type any any of those words…Tacrolimus Ointment. Prograf Ointment or Protopic and a host of other conversations will pop up for you.

Hopefully this tacro ointment brings you some relief. I know it has worked miracles for me.

Jump to this post

Hi Lori. Thanks so much for the wealth of information. I did a little reading about the ointment last night and I think it warned against using in the mouth but sounds like it was OK'd by your doctor to use there--right? I've just got my first upper partial a couple of weeks ago and because of the tender LP gums it is not fun. Now I wonder if I could use Tacrolimus on those places? Guess I should clarify with my derm doc. Will go through the sites you listed later on. I was in a car accident at noon today and had to stay for an hour and a half as there were three cars involved. Also it was 100 degrees. I think I'm OK but will probably be sore tomorrow. Thanks again for this information. Faye

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Aug 19, 2023
In reply to @fdixon63 "Hi Lori. Thanks so much for the wealth of information. I did a little reading about..." + (show)
@fdixon63

Hi Lori. Thanks so much for the wealth of information. I did a little reading about the ointment last night and I think it warned against using in the mouth but sounds like it was OK'd by your doctor to use there--right? I've just got my first upper partial a couple of weeks ago and because of the tender LP gums it is not fun. Now I wonder if I could use Tacrolimus on those places? Guess I should clarify with my derm doc. Will go through the sites you listed later on. I was in a car accident at noon today and had to stay for an hour and a half as there were three cars involved. Also it was 100 degrees. I think I'm OK but will probably be sore tomorrow. Thanks again for this information. Faye

Jump to this post

Oh no, Faye, you were in an accident today? I’m glad you’re ok! Though don’t be surprised if you do feel a little sore tomorrow. I can’t imagine standing around in 100 degree temps waiting…🥵

Yes, tacrolimus can be used off-label for special applications. I have a strong dental background so when you mentioned the lichen planus on gums to treat the sore areas from your partial, that caught my attention.

Do you feel your partial rubs on the gums unevenly in those particular areas? Do you feel them first every time you place the partial in your mouth? If so, then you may need a trip back to your dentist just to have those areas on the partial trimmed and polished again. There may be tiny high areas on the plastic which can make your gums tender where it rubs. Don’t hesitate to call your dentist, they expect there will be some adjustments

As for using tacro ointment in the mouth…again it’s off label but there are quite a few members in the forum whose doctors have recommended the use or the painful conditions that we sometimes have. I dry the area on my tongue with a tissue then run the ointment in for about 15 seconds and avoid eating or drinking for 15 minutes. We can’t prescribe medications or treatments in the forum so check with your dermatologist first. You may be able to use the ointment on those tender spots with the denture if it is LP. But it may also be sore spots from the partial itself. In that case it won’t do much good until the partial is trimmed and then the gum can heal. Does that make sense?

REPLY
1 reply
fdixon63 | @fdixon63 | Aug 19, 2023
In reply to @loribmt "Oh no, Faye, you were in an accident today? I’m glad you’re ok! Though don’t be..." + (show)
@loribmt

Oh no, Faye, you were in an accident today? I’m glad you’re ok! Though don’t be surprised if you do feel a little sore tomorrow. I can’t imagine standing around in 100 degree temps waiting…🥵

Yes, tacrolimus can be used off-label for special applications. I have a strong dental background so when you mentioned the lichen planus on gums to treat the sore areas from your partial, that caught my attention.

Do you feel your partial rubs on the gums unevenly in those particular areas? Do you feel them first every time you place the partial in your mouth? If so, then you may need a trip back to your dentist just to have those areas on the partial trimmed and polished again. There may be tiny high areas on the plastic which can make your gums tender where it rubs. Don’t hesitate to call your dentist, they expect there will be some adjustments

As for using tacro ointment in the mouth…again it’s off label but there are quite a few members in the forum whose doctors have recommended the use or the painful conditions that we sometimes have. I dry the area on my tongue with a tissue then run the ointment in for about 15 seconds and avoid eating or drinking for 15 minutes. We can’t prescribe medications or treatments in the forum so check with your dermatologist first. You may be able to use the ointment on those tender spots with the denture if it is LP. But it may also be sore spots from the partial itself. In that case it won’t do much good until the partial is trimmed and then the gum can heal. Does that make sense?

Jump to this post

Yes ma'am. All that does make sense. The theory is that the gum sensitivity is from LP. My dentist told me from the beginning that this would be "hard." I'm trying my best to be a trooper but it looks like eating will be difficult from now on. Right now I take very small bites and my meals sometimes is a nutritional drink, i.e. instant breakfast or a shake from Kate's Farm--I don't tolerate the Ensure products very well.
As a side note: About 4 months ago I had three teeth break off at the gum line in one week's time. One of the teeth was an anchor tooth for a bridge so I now had a gap of two teeth on the right and three on the left. No one has a clue why. I do have a lung disease and over various weeks during the last 4+ years I had to do periods of inhaled antibiotics. That is the only thing I could come up with. I did have COVID last Sept and was in the hospital for 8 days so... not sure if that treatment could be a factor.
Thanks again for your insight. Have a blessed evening. Faye

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