oral lichen planus

I feel for you Rabia. It sounds like you are far beyond miserable. I too have OLP and I hate it ! You didn't say if you are being treated for it. I have been seeing an oral dermatologist and have been prescribed nystatin & dexamethason solution swish. And flucinonide topical gel. It's not curing it but seems to tame it down some. Please see a dr. for some relief! I wish you well.

Please forgive me I'm new on here and I've replied but I put the wrong person name down. I replied to Lynnkidd I've explained on there what medication I'm on please forgive me . I was wondering and this question goes to all olp suffers, are you able to work. I couldn't even imagine having to go back to a job with this nasty mouth disease . Thank You Froggy44 for you reply. Much love Rabia.

It sounds like you are much worse off than I am. I am 72 years old and retired. However I keep very busy with volunteering, health club, and friends. I believe I would be able to have a job of need be. I've struggled with mouth issues for a couple of years but had confirmed diagnosis 6 months ago with a biopsy. I have the benefit of living near of the Mayo Cinic. They are excellent! I hate the OLP but I keep busy.

I really hope you will find some answers and healing will come your way.

God's blessings

Dear Rabia,

I've had episodes that were so painful I could not work.

God bless

I feel like I'm a big baby because I've had this nasty mouth disease olp 18 months and I can't remember a day feeling not depressed and on going pain. I've even have my bed into my living room as I'm always lying down. I feel like my friends don't want to be around me anymore and I don't have family. On this discussion only one person maybe two who have been diagnose with olp and one of the lady's said she so scared of it coming back . Eating gluten is that why I'm having unbearable pain. I'm 40 years old I can't imagine living with this for the rest of my life. I feel isolated. I pray that God will take me in my sleep. Does anyone else have these feelings. I'm sorry ladies I hope to God that none of you are feeling like I do. I have suffered with depression most of my adult life. That doesn't help. Thank you for replying Noni God bless you and those you love. Love Rabia.

I'm so sorry! It's terrible. I'm in the throws of my second flare. I hit it early with an anti viral and Dexamethasone Elixir mouth rinse and it's doing a little better. Do you have a doctor you can talk to about possible treatments that will help you improve? It's discouraging and I feel your pain. There are also many good drugs out there to help with depression. Don't give up!

Dear Rabia,

It can be absolutely life changing due to the excruciating pain. I know how you feel; last winter I was riddled with lesions throughout my mouth and tongue. I have several other things happening all at once, and there were times I wished I would die.

I started taking anti-virals, and went to an infectious disease specialist. Now, I take 1,000 mg of valacyclovir daily. I also use tee tea tree oil q-tip swabs to dab on lesions.

Because I have been able to get some of my other health problems under control, I have less stress. All these things together have helped me get to a much better, more optimistic place. I think the U.K. Dental universities have better care and treatment for olp. Hang in there. Do not give up.

Sending you healing love and light.

Hi, Julie,

I take 1,000 mg valacyclovir daily. I think it really helps.

I take it during a flare. I'm seeing my doctor in a couple of weeks. I will ask about taking it daily, long term Thanks!

Dear Rabia,

im so sorry you're feeling so depressed over your olp. I know it hurts as I had a lesion on the side of my tongue for six months that rubbed on my back tooth. I went to five different doctors that didn't diagnose it properly. I was told I had lichen planus and there was nothing I could do except rinse with warm water and baking soda and protect it with a steroid paste. None of that really helped and some days it felt better than others. Finally the last oral surgeon I went to said it did not look like lichen planus and that it should be removed and biopsied. And you know the outcome.  Cancer.  So now I'm going to be brave and go to the hospital on Thursday to have more of my tongue cut and it's going to be extremely painful for a week or two. You cannot give in to this pain.  If your present doctor isn't helping you, find one that will.  You need to take your bed out of the living room and try to find things to do during the day to keep you busy.  You have one life..fight for it.  If you stay in bed all day you are going to end up with other problems.  Please get help. I think eventually the lichen planus will go into remission. I wish you all the best.

carolyn

 

Carolyn said exactly right .... find a doctor who will help you! The advise you got is ridiculous! Keep looking for someone who is familiar with treating OLP. The pain is dibilitating and that coupled with depression makes it imperative you find someone who will help you!!!

Thank you Caroline and to other's who got back to me. I can't explain to you all how much you have helped me. I now know I'm definitely not getting the right help with my olp. I'm going to show my Dr what you all have said and my nurse who comes to see me every 3 weeks, I don't think I've been treated as a human being because of all of my other illnesses. Even my dentists have said lies about me and I went to another dentists and because I had a problem with my veneer they told me to go back to my dentist and tell them they have a duty of care for me and to come back to them after they had done the work, but a week later I got a letter from them saying that due to much thought they was sorry but they didn't want me back there which means I don't have a dentists at the moment . I've revived more advice and care from you ladies. Much love to you all, Rabia. X

Hello

just wanted to drop a line to say it's a little over a week since I had my tongue surgery. I would say I'm doing pretty well. im getting out, doing simple things. Lately been having a burning pain in tongue that Tylenol doesn't seem to help. Maybe nerves regenerating. Will get my final report July 5 and let you know how I made out..

Praise God you are reporting no major problems.

Tongue burning and pain is one of my olp symptoms.

I pray you will recover completely and be pain free.

~Blessings

Glad to hear from you. I've been wondering about it. Can to talk without part of your tongue? How much and where did they take? I'm in my 2nd flare and the lesion on my tongue and on the inside gum of my bottom teeth are quite painful. I really hate this stuff and worry about mine turning into a malignancy. I appreciate your updates.

Carolyn, I forgotten to tell you , I took your advice and I started walking 2 miles a day. But I've relapsed. I feel so dam ashamed because it's harder to start over again. While I was walking my olp started to get better every ten minutes I would have to stop and spit out all the stuff that comes with olp which ment I was getting the badness out of my mouth. The reason I stopped I had a bad chest infection so now I'm on a Ventolin. If it wasn't for you telling me I wouldn't of got my bed. There's not a week gone by I've not thought about you . Olp is on my tounge now and feels like a sand paper. I hope your over the worst, and on the mend. Fingers crossed I can start up my walking again. Much love Rabia.