Lichen Planus Support Group

So.

About 3 wks ago I was diagnosed with LP. For now I only have it in the vaginal area. When the diag was confirmed my dr told me about Prednisone and Cellcept. I tend to research thing to death and from what I learned about those meds I surprised that my head didn't explode. My hubby is in the medical profession and even he was very concerned. We've been married for 36 years and he is the very best husband on the planet. So caring, understanding ... Etc. BUT he won't tell me what avenue I should take. Says its entirely my decision. Ok.....so I went back to the doc this morning and she is extremely confident that she will be able to help me. Sigh.......

I do have confidence in her but I've already got a compromised system due to Celiac Disease and Pulmonary Embolisims that I had last Sept.

Sigh.......Seems I've been sighing quite a bit lately.

On June 4th I'm having shoulder surgery so she said to continue using the creams and to come back for the scripts at the end of June.

I am so very greatful to have found this group. Now I don't feel so all alone.

God bless you all.

Hi Beverly,

The medical profession is largely a game for money, as I suspect your husband understands. Most doctors learn quite quickly that drugs for the large part do not work with the body, but against it, and focus on symptoms. My wife has the same problem, we are working on Hulda Clark protocols (a.k.a rife freq) for treatment. Also working with targeted nutrition, both of which work to enhance the immune system, and not mask the symptoms. I suggest you find a natural practitioner to evaluate and support your immune system, and keep away from drugs. This will also give your husband an opportunity to move towards being an integrative doctor.

Hi BeverlyWend and raid, thanks for posting. Welcome. Sorry you have lp. Hope we can find answers.

Thanks do much for the information. I'll def share it with my sweetness.

Hi Blackmon! Thank you for responding to me plea for help. It's so comforting to other folks that a tally have the disease. My hubby is the very best at taking care of me. He does all of the food shopping so that I don't encounter any gluten and THEN does the cooking too! I am truly blessed beyond measure. Xoxo

Hello: I just found this site and discussion group. Very interested in learning more about a connection between gluten intolerance and Lichen Planus. I have both. The LP is manifesting in my mouth, and on my lower legs. I've just recently noticed spots on my chest area as well. I have not been diagnosed with gluten intolerance or celiac disease medically, but think I may ask for the test to be done. Any thoughts?

I have VLP and Celiac Disease. I believe in my heart of hearts that they are most definitely kissing cousins. My dermatologist had me try Cellcept this past week but I had to stop taking it I was sooooo sick. All my best to you. 🌺🌺🌺

I am so upset over the medications that my dermatologist want me to start taking. Last week I started taking Cellcept but had to stop because I became so I'll. I told her that I'd continue to use the ointments and talk to her about other meds in Aug when I see her again. She told me about another med that we could use instead and after some research I discovered that the side effects are almost as bad as Cellcept. This morning I discovered a rad on my forearm but it doesn't look quite like the photos I've seen and isn't itchy. The main thing I'm bummed out about is the increased chance of getting cancer. I've also got Celiac Disease and that alone comes with an increased risk of cancer without any meds. I feel like I'm between a rock and a hard place not knowing which way to turn. Praise God that I've got such an incredible husband who is right beside me all the way. 

Hi BeverlyWend, I have lichen planus on the skin, mouth and most severely in vaginal area. I've been left with horrible hyperpigmentation on my arms, back, neck, chest, and even on my chin. I've been on cell cept for the past four months, as well using clobetisol topically in the vaginal area for the 5 months which has rendered useless. So much so, that my vaginal skin is continuing to fuse shut from the top to the point where my clitoris is completed covered now. I cry every day and am scared to death of where I'm headed. The one thing I recently did is get an ALCAT blood test done for food insensitivity. It was an out of pocket cost through my naturpathic doctor unfortunately. Although I tested negative for celiac disease I tested as having a high intolerance for starches, to include gluten based products. This was done through my naturpathic/homeopathic doctor and he now has me on a series of homeopathic remedies as well as a strict rotation diet of foods that I didn't react to. After eight weeks of being on this strict diet, he slowly introduces foods that I mildly reacted to and so on for another eight week period to the point where I can go back to eating alot of foods again. The thought process behind this is two fold. One, if there is indeed a link between an autoimmune disease and food insensitivity, I might actually start seeing some improvements overall with my horrible symptoms. Two, the goal is to be able to eat foods such as dairy, gluten, etc in the future so by rotating the foods building up my immune system again and slowly introducing foods that i reacted to, i may no longer have those sensitivities anymore and will be able to eat them again. The unfortunate thing about this is that it could take months and may never work. In the meantime, I have a vagina that is closing up on the outer side because the inflammation just won't subside one single bit. I have a follow up appointment with my dermatologist next week so I have to re-discuss some options with her. According to her, she said I have to be on cell cept for at least a year for even some noticeable changes to occur if it's going to. The problem though is the fusing of the vaginal skin is occurring alot faster than the time I need for this medicine and/or diet change to help. So at this point, all I can tell you is that you are not alone and I know how you feel and I pray that there is some hope for us out there.

shahnananaz, you are definitely not alone. please keep us posted. hope we can all help each other.