Living With Lichen Planus and It's Many Forms

One of my main reasons for starting this blog was to document my Wellness Journey.  The impetus for beginning that journey was a diagnosis of Oral Lichen Planus. Since there have been changes in my condition, I thought it was time for an update.

My experience with Lichen Planus


How do I cope with the various forms of Lichen Planus


I've had Oral Lichen Planus for three years.


This is a definition of OLP from Mayo Clinic


Oral lichen planus (LIE-kun PLAY-nus) is an ongoing (chronic) inflammatory condition that affects mucous membranes inside your mouth. Oral lichen planus may appear as white, lacy patches; red, swollen tissues; or open sores. These lesions may cause burning, pain or other discomfort.
Oral lichen planus can't be passed from one person to another. The disorder occurs when the immune system mounts an attack against cells of the oral mucous membranes for unknown reasons.
Symptoms can usually be managed, but people who have oral lichen planus need regular monitoring because they may be at risk of developing mouth cancer in the affected areas.


Living with Oral Lichen Planus.


In the spring of 2017, I noticed a constant irritation in my mouth. This is the best way I can describe the feeling: Think of a time when you've taken a gulp of coffee or tea, forgetting that you had just refilled your cup and it was no longer luke warm. After the initial intense burning subsides, you continue to feel scalded. This is how my mouth feels most of the time. Sometimes it almost goes away, and other times it feels even more painful.

There is no cure for OLP, and most treatments include steroids...something I'd like to avoid. Over the past three years, I've done a lot of reading and researching OLP and have joined several online support groups. I've saved links to helpful sites here: Oral Lichen Planus Resources.

As I've researched, I've tried various recommended helps and remedies, but for the most part, I manage my OLP with diet. I've learned what foods trigger a flareup and try to avoid them. I've written about this here: My OLP Diet.

There are lots of supplements that are thought to help, so along with my regular supplement pack, I take extra Vitamin D.

But then it occurred to me that there might be something in my supplements that works as a trigger. Not too far into January, I got a stomach bug that made the thought of swallowing supplements not very appealing. I decided it was a good time to take a complete break...and test out this theory that the supplements could possibly be a trigger. After a full month without supplements, the only change I discovered was that I felt lousy and had no energy...no improvement to my mouth. While I'm happy to be able to continue with supplements, I think a part of me hoped that I could find a simple solution to this illness.

While Oral Lichen Planus is where mine started, I've experienced other forms of Lichen Planus as well.


Also from Mayo Clinic: Other types of lichen planus


If you have oral lichen planus, you may have lichen planus lesions affecting other parts of your body.
  • Skin. Lesions usually appear as purplish, flat-topped bumps that are often itchy.
  • Genitals. Lesions on the female genitalia often cause pain or burning and discomfort with intercourse. The lesions are usually red and eroded and occasionally appear as white areas. Lesions can also occur on male genitalia.
  • Ears. Lichen planus of the ears can lead to hearing loss.
  • Scalp. When skin lesions appear on the scalp, they may cause temporary or permanent hair loss.
  • Nails. Though rare, lichen planus of the toenails or fingernails may result in ridges on the nails, thinning or splitting of nails, and temporary or permanent nail loss.
  • Eyes. Rarely, lichen planus may involve the mucous membrane surfaces of the eyes and can cause scarring and blindness.
  • Esophagus. Lichen planus of the esophagus is rare, but when it occurs, it may result in a narrowing of the esophagus or the formation of tightened, ringlike bands in the esophagus that can make swallowing difficult.

Types of  Lichen Planus I've experienced:


The list above doesn't mention the nose, but I know from my own experience and that of people in my support groups that the nose can be affected. For about a year, I had constant irritation in one nostril that felt like a scab. After a year, it went away on its own. All I ever did was use coconut oil to moisturize soften the scabby area. Unfortunately, that irritation has recently come back.

I don't have lesions in or on my eyes, but I do believe they are affected. They are often itchy and feel sticky, like my tears are thick and I just feel like I can't focus properly.

I'm pretty sure my husband is the only man who might read my blog...I hope so because this next part is a little more personal.

Two years ago, I joined a Vulvar Lichen Planus support group, when I had what seemed to be a flareup in that area. The lesion went away relatively quickly, but I have other symptoms that the issue is ongoing that I won't go into. So far I've been able to find ways to deal with the discomfort.

And then came February. My mom became ill and less than a week later, passed away. One of the biggest triggers of Lichen Planus is stress...and I guess I had a bunch of it, cause I had a whole new type of LP flare-up. This time on my skin under my breasts. The itching was very much like the times I've had hives from an allergic reaction, but I think the worst part was more the emotional/psychological effects. I've pretty much learned to deal with having a sore mouth all the time, and the thought of One.More.Thing. to deal with...well, that just gave me more stress. Not being able to wear restrictive clothing has been a whole other challenge. I do have a new appreciation for my ponchos though...Thanks Jamie! One positive aspect of practicing social distancing is I don't have to dress appropriately! 

A few weeks after that first rash appeared, I noticed some spots on my neck and upper arms, near my armpits, more along my panty line and the itching on my chest came back. Later, I noticed a spot by my naval and on one ear. Next, I noticed the rash on my inner side of my elbows. It just seemed to keep spreading! 

With a pandemic going on, I couldn't just run out to a walk-in clinic and ask for advice. So I searched online and in my support groups and found some help there.


Lichen Planus On Skin

How do I cope with Lichen Planus?


I've tried a few different remedies for the lichen planus on my skin


Topical corticosteroid cream didn't really help.

Coconut oil and essential oils give some relief.

Turmeric paste may have helped but it's so messy I'd rather not use it!

An antihistamine was recommended in one support group. Because Oral lichen Planus is not an allergic reaction, I'd never considered using an antihistamine. 
But Lichen Planus on my skin is a new experience for me, I started taking one at bedtime to relieve the itching and help me sleep. It worked, but I feel terrible the next day, so it's not a great long term solution.

Some of the patches are not so much itchy as just painful, so I decided to try something recommended in a support group...bathing in water that contains a little dissolved Borax. It sounds strange, I know, so I did some research about it first. It did seem to relieve the irritation but the spots and patches, don't go away, they became a purplish stain on my skin. I've done some research on how to fade these spots but haven't actually tried any of these yet.

The main thing I'm continuing is daily nutritional supplements. I take 12 different prepackaged supplements that support overall health, and I take extra D3, recommended for LP. A complete list of ingredients would be too long, but Turmeric/Curcumin, Lycopene and green tea, recommended for LP, are a few that are included, along with multivitamins, minerals, omegas, antioxidants, probiotics, herbal blends and more.


One suggested treatment I'd like to try is light therapy with an ultraviolet B light. I still need to do more research on this.

These are just some of what I've personally tried. For more information on Lichen Planus and support groups you can visit this page:


Lichen Planus Resources


Most of the info on this page is about Oral Lichen Planus, but I'll be adding more links as I research the other types of LP.

Oral Lichen Planus Resources


And so the journey continues... If you too are dealing with some form of Lichen Planus, please reach out to me via the contact form on the sidebar.

1 comment:

  1. Wow Deb it sounds like you have been through so much with this lichen planus. I had no idea all that it could entail.

    ReplyDelete

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