← Return to Any relation between flareups and stress?

Discussion

Any relation between flareups and stress?

Autoimmune Diseases | Last Active: Apr 23 10:41pm | Replies (16)
Comment receiving replies
@sadea0208

Hi! You are the first person I've met with ELP, OLP, tissue LP ! The tissue LP is mainly on my legs. I have random lesions on my chest and tummy. I have lost two fingernails also! Like you, my immune system is attacking the mucus membranes in my body!!!
The med's I have are cortisone cream, Dexamethasone 10 day oral rinse and Lidocaine oral gel/rinse. I have not opted to take Dexamethasone/steroids!
I also am scheduled for Esophageal biopsies and stretching in 10 days!!! Ughhhhhh!
Do you have a doctor that has ever seen a patient with ELP? It's so rare! Less than 50 people in the country have ELP.
There is not a physician around me that has had a patient with ELP! 😞
It's so frustrating and frightening.
When were you officially diagnosed with ELP? I was diagnosed a couple of years ago by a gastroenterologist. Honestly, I ignored the symptoms I had. I knew something wasn't right. I was forced to see the Gastro doctor when I developed a severe yeast infection in my mouth and throat.
Things went downhill from there!! 🥺
Have you lost weight? I sure have!
I'm so happy to chat with you!❤️

Jump to this post

Replies to "Hi! You are the first person I've met with ELP, OLP, tissue LP ! The tissue..."
beckdog | @beckdog | Apr 23 10:41pm

Sorry it has taken me so long to answer. Have lots going in. Anyway, I started having swallowing issues in Dec 2022, and starting losing weight. I had suffered with vaginal issues for 3 yrs. prior. Had been to 3 or 4 gynecologists for that problem, but no clear diagnosis even after several biopsies. They were not testing for right diagnosis. Continued to lose weight, had 2 EGD with stretching, but there again, all they could tell me was what it WASN’T. In April 2023, had abdominal CT due to projectile vomiting. Nothing conclusive was found in GI tract but suspicious tissue in vaginal area. Sent me to Gyno Oncologist and on first exam diagnosed nothing malignant but Lichen Planue/Sclerosus.
The next week I had routine dental cleaning and asked dentist to look in my jaw because it felt inflamed. He brought medical book with pics & said it is oral lichen planus. BINGO! Came home, started researching, and wondered if that was what was in my esophagus. So pretty much, diagnosed myself. I live in upstate South Carolina, but found a doctor in Georgia that had seen a patient with ELP.
I had had a major breakout on front of my legs in January of 2023, saw dermatologist but was not diagnosed. He agreed that it was very likely that all of this was LP. Had biopsies of my legs next morning & positive for LP/ Doctor is Georgia did his own testing & biopsy specifically for LP and all were positive. He referred me to MUSC (Medical University of South Carolina) for treatment. This is a teaching/research hospital. Been seeing Gastro & Dermatology groups there since September 2023. I had lost 43 lbs by then.
Dermatologist actually prescribes the systemic medications.began with 30 days of Cyclosporin (med prescribed for transplant patients) 200mg/daily. He called it the heavy tank to try to get the LP under control. Side effects were bad but it worked. Then transitioned to maintenance drug Acitretin 10 mg daily - it did nothing. Since then I’ve taken two more rounds of Cyclosporin and now trying Sotyktu as a maintenance med. He doesn’t want me to take Cyclosporin long term due to side effects until absolutely no other option. I’ve learned this is a disease we try to manage but no cure. This dermatologist travels all over the world teaching. So I feel like I’m in good hands.
Sorry, just a long history.
P.S. Clobetasol Ointment for the vaginal LP. It’s been my new best friend. Becky

VIEW AND REPLY