How long have you had LP?
Posted , 6 users are following.
I was diagnosed with VLP in 2017, but had symptoms for two years before that. I thought I was keeping it under control, but had a checkup with my GP today and find that there are two areas where it's flared up again. Since I was discharged from my dermatologist last year I've had four flareups. So fed up with this. The dermatologist said it would probably burn itself out after two years, but I've had it for four years now and it doesn't seem to be getting any better.
How long have others had it?
0 likes, 8 replies
debbie01702 Cheetah
Posted
Ive been told by several docs there is NO cure! I have had this in and on all parts of body. When its at its worst i get cortisone shot which helps but there is no cure! Sometimes it calms some but never goes away. My worse problems is with mouth, throat and vaginal, inside and out. I wish i had better news for you. He
sandy58862 Cheetah
Posted
First flare almost 2 years ago, like you less bothersome symptoms prior. After treating w dexamethesone, nystatin, plaquenil, shots of prednisone, CELLCEPT has finally controlled my mouth,
julia52834 Cheetah
Posted
HI CHEETAH I can totally relate. Have had OLP & LP for 5 yrs now. Been on all meds including plaquenil and nothing worked. I too am tired of fooling around with this and yes most docs say no cure however there is something in all of use that is causing it. It may not be the same thing for each person but there is a trigger. Functional medicine doctors have helped people but I just cant afford them. If you can they may help. If we all work together to pass along information we may get some relief! Sorry no good answers but hopefully some in the future! Hang in there!
Gillian1956 Cheetah
Posted
hi I was diagnosed two years ago with VLP but had this for years I had seen gynocolagest over the years with it being diagnosed but was referred to dermatologist had two biopsies done she said it didn't shine as LP but she knew it was I've had different steroid creams but nothing gets rid of it , in fact I dont think it helps probably makes it more sore
Cheetah
Posted
Thank you all very much for your replies. Thankfully, the VLP hasn't affected other parts of my body, so I really feel for you, Debbie and Sandy. I'm still just using Dermovate steroid cream - Clobetasol - and hoping that this will keep it under control. The dermatologist was talking about starting me on steroid tablets last year, but it got better for a while so I didn't need them. So, all we can do is plod on, I suppose. I was feeling quite good until I saw the doctor yesterday, as I thought it was quite well under control - but I was wrong! Thanks again for your reponses. Take care.
TAB61 Cheetah
Posted
Hello again,
I'm crawling the wall with intense burning, the clobetasol use to help the past 4 weeks it's not doing a thing, I too feel as though its getting worse, I hardly can sit, squat bend over to puck up something, feels like my skin is being ripped open, the urine hitting it sends me to the roof!!! I'm going nutty, has anyone been prescribed a different steroid ointment or cream they use vaginally? Have any of you had issues with yeast infections on top of flares or possible the docs cant tell. All my test come back negative for yeast and utilization infections. August 20th I finally after over 18 month wait, I pray she can help me, I have no quality of life.
I also have esophogeaeal LP confirmed, I have my esphogus opened every three months as it closes and at times liquid is hard to go down. I'm on a special powder encapsulated, its compounded only at Mayo Clinic, in Minnesota, Its 3% Buedesidine and whatever else is in it, I open capsule and mix the powder with 10cc of sugar free pancake syrup, I squirt it down my throat with a syringe morning and night, rinsing mouth thoroughly with water to avoid thrush. Wait 2 hours before eating or drinking anything each time. It helps my throat esphogus tremendously. My mouth and Tongue are also flared at this time, I use protopic on that, its tolerable.
My Story began in May if 2013, I had a Total right knee replacement, by Sugust of that year, I couldn't taste anything, Everything I ate was too spicy, my mouth would burn and was always dry, my eyes began to tear constantly, my body began to breakdown slowly with rashes to my legs, arms, back, head scalp. I was tested over the next 2 years for allergies, they took each part of my knee and sent it in. It did come back that I was allergic to the bone cement they used in the knee replacement, other things too showed up allergy wise. I've had two highly reputable Dermatoligist tell me they believe the Breakdown of my body's immunity is caused from the foreign body ( knee replacement) I had done. They did say when the body's system is weak all kinds of things can happen, ie: Lichen Planus, Sojorns, Burning Mouth Disease, Dry Eyes, etc, etc the list goes on and on.
I too believe if we keep open and sharing our info hopefully a light will go off and we can find that common thread and conquer the hell we are all living with. I too am also a insulin dependent diabetic , with many injections a day and another once a week.
I can hardly take any antibiotic any longer due to allergy reactions. I was never ever sick until after 2013 knee replacement!!
Now I'm disabled a d ca t stand not living a quality of life. I'm praying and hoping for answers for all of us that suffer daily with this nasty enemy!
Could someone tell me what the cortisone shots are for, do they do them in the vaginal area? for the burning and pain. Do the biopsies of vaginal area need to be stitched? Do you suggest I take Pain meds before I go? I'm scared to death about this appointment. Thank you all very much for reading, my best to you all you have my heart❣
Cheetah TAB61
Posted
What a terrible time you're having, TAB61.Clobetasol seems to be the main steroid used for LP, but I'm sure others have had experience of different treatments. When my LP didn't clear up as quickly as the dermatologist had hoped she said she was considering starting me on steroid tablets, but, thankfully, I didn't need them in the end. However, if your LP is bad, and the Cobetasol isn't working, that's always a possibility. I do hope that your specialist is able to give you the help you need - it's awful that you've had to wait for so long before seeing her.
From what I've read, LP is an auto-immune disease, so it certainly sounds as though your knee replacement may have been the trigger.
Yes, the biopsies are usually stitched after the sample is taken - just 2 or 3 stitches which dissolve, so no need to have them removed. You'll still be numb from the biopsy, so you won't feel anything. I can remember taking paracetamol before I went for my biopsies, just to make the initial anaesthetic injection more bearable, it's a good idea to do this.
I know how painful it can be when urine hits the raw area, so all I can suggest is to use a barrier ointment, like Hydromol, before and after urinating. It really does help and is quite soothing. I also wash off the urine with plain water, then dry well and apply the barrier ointment. This help to keep the area moisturised and much more comfortable. Here's hoping that things improve for you after you've seen your specialist. Take care of yourself.
Cheetah TAB61
Posted
Meant to add, don't be scared about your appointment, look on it as an opportunity for things to improve - which, hopefully, they will. Before you go, write down your symptoms etc. and also questions that you want to ask - this way, you won't forget anything. Can someone go with you? This also helps as they can hear the answers to questions, too, as well as providing you with some support. Good luck. I hope it all goes well for you.