Anyone using Methotrexate for treating Lichen Sclerosis?

@ddn I do as well. I use to use Methotrexate for my inflammatory arthritis. It raised my liver levels.

@lww thank you so much for sharing - this is very helpful! My maternal grandfather had LP on his legs only. Like you, I’ve also heard that yes & no about heredity. My initial oral onset was sparked after 2 root canals & a long period of high stress. I chased a diagnosis thinking it was a food allergy for nearly a year before I started having issues in my throat & was diagnosed w/ esophageal LP in July of this year. Have you experienced any issues w/ lesions in your hands or eyes tearing?

Yes to throat and ears. In last 2 years I've had two endoscopies and been treated for right ear. I have bouts of not being able to swallow and my right ear swelling and itching. The ear started when I started wearing hearing aids. It goes and comes. Usually by time I get to see doctor it is better. I've been to gastro doctor about swallowing. This last time he did biopsy and it came back with autoimmune gastritis. I personally think it is all related. My first onset of lichen planus was oral. Since you mentioned it. It was about the time I had a root canal. At that time I became allergic to lidocaine in shot form. They biopsied my vaginal and it showed lichen planus. Don't remember biopsy of oral but even I can see it.

I’m not sure what you are using for your ear, but I found Fluocinolone Acetonide Oil - ear drops to be helpful. As for the esophagus, I’ve been taking a compound budesonide suspension & it has helped marginally. I still feel like I have something stuck in my throat.

@diamonddi
Hi, I, too, have been diagnosed with VLS. I've had this for over 2 yrs.
I've been on methotrexate and experienced side effects of extreme tiredness, brain fog, lightheadedness. MD cut dose and helped but now side effects came back again with a vengeance!
I take also use Opzelura cream on area...truly a miracle drug. It worked well with methotrexate. I don't know about stopping methotrexate but can't tolerate side effects.
Any suggestions?

Hi Mag2026. I have labial lichen planus and have never been told about Opzelura. You said you use Opzelura cream and it is "truly a miracle drug." How often do you use it?? Is it a prescription med?? I'm on Clobetasol and Estradiol but it does not relieve the pain. Thanks. Looking forward to your answer. Faye

@fdixon63
Hi fdixon63, I was put on everything you can think of by my dermatologist for the symptoms. Clobetasol did nothing.
Derm decided to try me on Opezlura, which is a non-steroidal cream. It is the only thing that brings complete relief for me. (It is very costly and hard to get, though but I'd pay anything...derm helped with that.) I use it once a day in the morning and that's it! I love that it isn't a steroid cream
Now my problem is that I also take methotrexate. I get lightheadedness, brain fog, balance issues and tiredness on most days with it. I can't stand it anymore! I'm trying to cut back on the dosage but I think it might be affecting the effectiveness for the other symptoms. Is there anything else to try besides methotrexate? It really is affecting my quality of life.
I'm sorry you're suffering with this horrible disease, too. 🙁

@mag2026 - Thanks for your response. I'm concerned about the continual use of Clobetasol and sometimes I feel I may have become hypersensitive to it or to Estradiol. I'm excited to talk to my dermatologist about Opezlura. Why were you prescribed methotrexate for your LP? If the Opezlura is doing such a good job, why did they start you on methotrexate? I've been dealing with this for 30+ years and know it is incurable but to find something to get relief would be wonderful. Faye

Hi Faye,
I'm so sorry you've been dealing with this terrible disease for so long! I was told in order to control symptoms, topicals are often not enough and an immuno suppressant like methotrexate is needed to prevent irreversible scarring, itching and pain. I'm trying to decrease the methotrexate because of side effects. I tried to decrease the dosage in the past but the physical symptoms re-emeged.
I'm trying again to cut back on methotrexate or maybe try an alternate med.
I hope this helps.

@mag2026 -Understood. Thanks for the clarification. Faye