John, Volunteer Mentor | @johnbishop | Jan 20, 2019
Hello @painfulplanus, welcome to Mayo Clinic Connect. There is another active discussion where your post may have more visibility here and you will meet other members discussing lichen planus like @alpaca, @wisgrama, @elizabethbryant, and others:
Hello@painfulplanus Lichen planus is a very difficult condition to suffer from. I had it for years in my mouth and have a little bit of it again. Steroids help but are not recommended long term and surgery can be a fix if the LP is narrowed down to one area or one lesion. CBD is not yet legal in my country. I guess it might help the pain but it is also the inflammation that you need to reduce. Has your medical centre come up with any suggestions? Hope you find some relief soon.
Hello @kneeta, welcome to Connect. I'm sorry you are seeing too many emails. It's easy to stop. When you receive this email, click the Unsubscribe link at the bottom of the email message you received. You can also click the View & Reply button and scroll to the top of the discussion and click the +Following to stop following the discussions and not see any new emails when members post to the discussion.
Hello @painfulplanus, welcome to Mayo Clinic Connect. There is another active discussion where your post may have more visibility here and you will meet other members discussing lichen planus like @alpaca, @wisgrama, @elizabethbryant, and others:
I've had Lichen Planus vaginal or as my Dr. called it Lichen Sclerosis , and I've had it for many years. I used Clobetasol as Rxd by Gyno and it got me thru. As with all Lichen.. it so hard to get under control. The Clobetosol did relieve the pain and burning immediately. But as always it does come back. Maybe there's something new out there today. I would suggest you talk to your GYNO. Good Luck
and prayers sent.
I wasn't diagnosed with lichen planus but my vulvar symptoms were similar and there may be a tie in. My vulva area was red, burning and and painful. For me it was based on several issues,making it more difficult to diagnosis.
Ideas when all else fail.
1- I did learn I had Allergic Contact Dermatitis, ACD and results from the 5 Day Extended Patch Test proved I was allergic to many chemical and even natural ingredients in my soap and even my toilet paper with softening agents. Avoiding those improved the intensity of my symptoms. Yet something more was going on.
2-I didn't test positive to yeast in the vagina with the swab test yet I found an OB who believed my vulvar symptoms were based on internal yeast living in the tissue of the vulva, it could be biopies but said that was painful, healing was slow and had other ideas to try first. Of course I did rounds of anti-yeast meds, and symptoms improved for a while only to return. This OB recommended I start reading about anti-yeast diets. She said women tend to have yeast living and breeding in our intestines and they must be starved from the foods that keep them alive. Killed out. Yeast raises inflammation because our histamine warriors are battling it, trying to kill it off and this raises our inflammation. For many women the vulvar tissue is targeted. I resisted this diet as it is a 2 month minimum detox of all sugar (natural and processed) and all carbs. It's a bit more complicated, yet that is the basically it. I also took a few anti yeast herbals. If you are miserable enough you will be willing to make this sacrifice. Yes you will crave sugar and go though sugar withdrawal. The starving yeast send messages to our brain to be fed and thus the cravings. Just like a junkie who wants his opium goes though withdrawal because of cellular messages being sent to his brain demanding a fix. It is not immediate. At 6 weeks I noticed a major improvement. After 2 months I was dramatically improved. Still zero processed sugar for life. Limited fresh fruit, a few small servings a week. No nightshade foods (yes that even includes potatoes). Limited carb servings, no gluten or potatoes. Lots of meat, poultry and fresh veggies (no nightshades). Nuts like almonds and walnuts (no p-nuts). Now going on 4 months I feel the best I have for a decade. My mouth doesn't water looking at sweets as the serious craving has died off. I bake for my family, serve them ice cream and so on and my mouth no longer waters looking and preparing these foods. Yet I know if I too one bite I would keep going. I should also mention no alcohol, yet I quit drinking 3 years ago so going though that withdrawal was past me.
If my vaginal lichen planus does not improve (I was taken off the topical steroid I was using, Triamcinolone, as it began burning after almost 9 years
of use.) my doctor has suggested Plaqenil as a "cure". I'm hesitant to use it mainly because it can cause retinal eye damage in a small number of cases.
Before that step she wants me to take prednisone for a number of days to see if that can knock off the symptoms, and then
have me go back to Triamcinolone.
I would appreciate any comments, especially from anyone who has knowledge about plaquenil.
If my vaginal lichen planus does not improve (I was taken off the topical steroid I was using, Triamcinolone, as it began burning after almost 9 years
of use.) my doctor has suggested Plaqenil as a "cure". I'm hesitant to use it mainly because it can cause retinal eye damage in a small number of cases.
Before that step she wants me to take prednisone for a number of days to see if that can knock off the symptoms, and then
have me go back to Triamcinolone.
I would appreciate any comments, especially from anyone who has knowledge about plaquenil.
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Hello @painfulplanus, welcome to Mayo Clinic Connect. There is another active discussion where your post may have more visibility here and you will meet other members discussing lichen planus like @alpaca, @wisgrama, @elizabethbryant, and others:
Groups > Autoimmune Diseases > Erosive oral lichen planus
-- https://connect.mayoclinic.org/discussion/erosive-oral-lichen-planus/
Here are some more sites that may be helpful for treatment options:
Cancer Therapy Advisor - Vulvovaginal Disorders: Lichen Planus
-- https://www.cancertherapyadvisor.com/obstetrics-and-gynecology/vulvovaginal-disorders-lichen-planus/article/618152/
The Royal Women's Hospital - Lichen Planus
-- https://www.thewomens.org.au/health-information/vulva-vagina/vulva-vagina-problems/lichen-planus
Has your doctor offered any treatment suggestions?
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2 ReactionsHello@painfulplanus Lichen planus is a very difficult condition to suffer from. I had it for years in my mouth and have a little bit of it again. Steroids help but are not recommended long term and surgery can be a fix if the LP is narrowed down to one area or one lesion. CBD is not yet legal in my country. I guess it might help the pain but it is also the inflammation that you need to reduce. Has your medical centre come up with any suggestions? Hope you find some relief soon.
-
Like -
Helpful -
Hug
3 ReactionsPlease don't seen any more e-mails to many in one day
Hello @kneeta, welcome to Connect. I'm sorry you are seeing too many emails. It's easy to stop. When you receive this email, click the Unsubscribe link at the bottom of the email message you received. You can also click the View & Reply button and scroll to the top of the discussion and click the +Following to stop following the discussions and not see any new emails when members post to the discussion.
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2 ReactionsNo... just looking.
Hi @painfulplanus ...have you ever tried Emuaid? It’s expensive, but works!
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1 ReactionI've had Lichen Planus vaginal or as my Dr. called it Lichen Sclerosis , and I've had it for many years. I used Clobetasol as Rxd by Gyno and it got me thru. As with all Lichen.. it so hard to get under control. The Clobetosol did relieve the pain and burning immediately. But as always it does come back. Maybe there's something new out there today. I would suggest you talk to your GYNO. Good Luck
and prayers sent.
-
Like -
Helpful -
Hug
3 ReactionsI wasn't diagnosed with lichen planus but my vulvar symptoms were similar and there may be a tie in. My vulva area was red, burning and and painful. For me it was based on several issues,making it more difficult to diagnosis.
Ideas when all else fail.
1- I did learn I had Allergic Contact Dermatitis, ACD and results from the 5 Day Extended Patch Test proved I was allergic to many chemical and even natural ingredients in my soap and even my toilet paper with softening agents. Avoiding those improved the intensity of my symptoms. Yet something more was going on.
2-I didn't test positive to yeast in the vagina with the swab test yet I found an OB who believed my vulvar symptoms were based on internal yeast living in the tissue of the vulva, it could be biopies but said that was painful, healing was slow and had other ideas to try first. Of course I did rounds of anti-yeast meds, and symptoms improved for a while only to return. This OB recommended I start reading about anti-yeast diets. She said women tend to have yeast living and breeding in our intestines and they must be starved from the foods that keep them alive. Killed out. Yeast raises inflammation because our histamine warriors are battling it, trying to kill it off and this raises our inflammation. For many women the vulvar tissue is targeted. I resisted this diet as it is a 2 month minimum detox of all sugar (natural and processed) and all carbs. It's a bit more complicated, yet that is the basically it. I also took a few anti yeast herbals. If you are miserable enough you will be willing to make this sacrifice. Yes you will crave sugar and go though sugar withdrawal. The starving yeast send messages to our brain to be fed and thus the cravings. Just like a junkie who wants his opium goes though withdrawal because of cellular messages being sent to his brain demanding a fix. It is not immediate. At 6 weeks I noticed a major improvement. After 2 months I was dramatically improved. Still zero processed sugar for life. Limited fresh fruit, a few small servings a week. No nightshade foods (yes that even includes potatoes). Limited carb servings, no gluten or potatoes. Lots of meat, poultry and fresh veggies (no nightshades). Nuts like almonds and walnuts (no p-nuts). Now going on 4 months I feel the best I have for a decade. My mouth doesn't water looking at sweets as the serious craving has died off. I bake for my family, serve them ice cream and so on and my mouth no longer waters looking and preparing these foods. Yet I know if I too one bite I would keep going. I should also mention no alcohol, yet I quit drinking 3 years ago so going though that withdrawal was past me.
-
Like -
Helpful -
Hug
3 ReactionsIf my vaginal lichen planus does not improve (I was taken off the topical steroid I was using, Triamcinolone, as it began burning after almost 9 years
of use.) my doctor has suggested Plaqenil as a "cure". I'm hesitant to use it mainly because it can cause retinal eye damage in a small number of cases.
Before that step she wants me to take prednisone for a number of days to see if that can knock off the symptoms, and then
have me go back to Triamcinolone.
I would appreciate any comments, especially from anyone who has knowledge about plaquenil.
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1 ReactionWelcome to Connect, @sausalito. Here’s some information from Mayo Clinic, about Plaquenil: https://www.mayoclinic.org/drugs-supplements/hydroxychloroquine-oral-route/description/drg-20064216
I’m tagging @tarahbeth @kimdett @naomisantiago06 @tdani75 as they’ve written about Plaquenil in various discussions on Connect. I’d also like to invite @mariannj @dazlin @sharsharlee to this discussion, for their thoughts about Triamcinolone.
@sausalito, if the prednisone does help, would you still consider starting Plaquenil?
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