I hate this...lichen planus

Posted , 15 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

I was diagnosed with lp on 4april14. I was that bad they put on 16 steriod tablets a day. My  skin and mouth cleared up great on the steriods. I am now off them 2 weeks today. My lp has come back in my mouth and is just starting on my skin agaib. Obviously I am devastated. Can anyone recommend me anything I could so as I don't want to go back on fhe steriods.  Your help would be much appreciated as I am losing the will to live. Also does anyone know if red wine can trigget lp. 

1 like, 13 replies

Report

13 Replies

Next
  • Posted

    I find normal toothpastes and mouthwashes are too harsh. I use eucryl tooth powder to brush my teeth.

    hope this helps x

    Report
  • Posted

    Hi Edele. ??When I had it ( not as badly as you have ) I found that wines,vinegar, tomatoes, curries and all  citrus fruits aggravated it , causing soreness and burning.

    David has copied an intertesting article but it says "We suggest that the removal of amalgam fillings can be recommended in all patients with symptomatic oral lichenoid reactions associated with amalgam fillings if no cutaneous lichen planus is present, so as your skin also is affected it isn't recocmmended  in your case.

    My LP went after a couple of years, a little vestigial still on a thumb nail is all.

    Unfortunately it was soon followed by LS.

    I hope your steroids can be reduced and that the LP will vanish in time.  Yes, it's nasty! Good luck

    Report
  • Posted

    Hi Edele, I was diagnosed in May with OLP ulcerative and have it in the mouth, esophagus and lips. I used a steroid paste minimally after riding out the sores for a couple of weeks and that helped resolve the sores and at least removed the agonizing pain from my tongue. An oral surgeon also told me - remember, it is a tooth brush, not a gum brush, so I made sure to stop the brush at the top of my teeth and my sores healed several days after that - that was about the only good advice I've received from a dentist and 2 oral surgeons. The rest basically said - oh man that sucks, its a disease that has no cure, avoid spicy food and alcohol. Great, like I hadn't figured that out!

    SO, I truly believe treatment for a neck issue utilizing steroids in my spine along with anti- inflammatories and also having the IUD, caused this breakdown in my immunity, so am working with a homeopathic nutritionist to rebuild it. The steriods are a quick fix but immunity is the goal. I am currently on a routine of the following: tea tree toothpaste, Spry berry mints and Spry mouth spray (life savers for the dry mouth and potential tooth decay as a result of less saliva), high potency liquid probiotics which I swish in my mouth and gargle, then swallow twice per day, Host Defense Mushrooms twice per day, Aloe Vera liquid (started tonight) swish and swallow and zinc. I went easy on the steroids because it can then cause issues with the candida and lead to an inbalance. I have never used homeopathic medicine to this extent - just vitamins and probiotics, so this is all new to me but go talk to one. They typically see auto immune disease folks once all typical meds have failed them, and she knew her stuff about building immunity.

    I've read a ton, I don't currently have it on my skin but there is a lot of research indicating the light therapy is successful. I am lucky to know someone who had OLC and hers was also triggered at times of stress, hormone changes (menopause, which I am not there yet so imagine this will last some time for me), intense anger etc. and she has now been 5 years symptom free. Hang in there, its not pleasant but you can beat it. I haven't YET but I will smile

    Report
    • Posted

      Could you provide more info on the homeopathy medicine, kerrygcmom?

      I have stress issues and that could be the reason I have these frequent flare ups this year (plus the 2 slices of bread I eat evvveryday, so hard going wheat free). Don't want to take any more prednisone and hurt myself more. Trying to start homeo and any info where you consulted, what you taking would be very helpful to me. Thank you.

      Report
  • Posted

    Hi Edele,

    So very sorry to read about your suffering from OLP. Please  don,t despair and get depressed.  You can   find a way to cope.  Avoid what triggers it off, as you have only been diagnosed since April and still coming to terms with this disease. Its early days yet.  Yes, red wine can trigger it off, but each one is different.  

    16 steroids a day is terrible.. Try and stay off them.

    What really helps me is Quadragel cream, used up to 4 times a day .  Do try it.  it will at least give you relief.

    All the best

    Anthea

     

    Report
  • Posted

    David has a good suggestion re chelation.  I had OLP together with alopecia, you often get 2 auto-immune problems together not just one. I had all my old mercury amalgam fillings out, and consulted a homeopathic doctor, and together we researched heavy metal detox papers. The following regime cleared both up over time

    - chelating agent which binds the heavy metal- seaweed extract

    - taken together with a fish oil capsule, 30 mins before eating anything, once a day

    - Vitamin C 1000mg per day , but never within 30 mins of the above

    - garlic capsule per day plus lots of fresh garlic

    - drops of arsenicum alba (homeopathic)

    - cilantro drops and freshcilantro

    All natural products except arguably the AA, so I felt very happy taking them. Not everyone is susceptible to mercury poisoning from amalgam fillings, but it does leach out of the fillings over time and mercury settles in the central nervous system. The Canadian Dentistry Campaign for mercury-free dentistry is worth a look. If Irecall they say that adults should have no more than 2 or 3 mercury- amalgam fillings whereas I must have had over a dozen, many of them over 40 years old. 

    I also felt very good on this heavy metal detox program, and I am sure that it worked. 

     

    Report
  • Posted

    Hi,  I have it for 14 months now. My skin looks horrible, only place left is my face. I even got it on neck and my head, losing hair for a month now,  I can't stop crying. I am so angry to Doctors as well. How can they not treat me? Why there is anything out there for this? I am devastated. Pls update me how you are now? Thanks and all the best
    Report
  • Posted

    I don't know a better way to tell you this....GO TO THE BEACH!!!!   I live in Florida and had this hit me about a year and a half ago.  Steroids stopped it until I stopped them.  I read everything...I mean everything. One lady had mentioned going to Costa Rica and getting so much better. She felt it was the calming part of going on holiday. She also thought the water might have helped. Well, I live in Florida. I went to the beach and soaked my whole body until my fingers and toes were wrinkled. Man...did that help. I did this a few days. Yes it was calming but I think the water played a big role. The last few days I have felt so much stress and also thought I perceived it coming back. I am even more freaked as you may well guess. So I spent and hour in the ocean. Life is so busy I had not been in the ocean since. Anyway, this hour was great. My senses feel less like an onset. I hope to return tomorrow to do another few hours. I do not want that hitting me again.  I also saw an obscure note that Bananas trigger this. I had just started eating them again....and that feeling came back. No more bananas for me and plenty of salt water from the ocean.  Salt baths don't really seem to help. It is ocean water that helped me.  I hope this helps you. I know well the feeling of despair.  Best wishes and remember you are not alone.    It’s tough I know. 
    Report
    • Posted

      Hi Bob,

      Good to read your mail.   Just to tell you that I live in a tropical country and I eat bananas every day!  and all other fruit. 

      I think that what works for one person, does,nt neccessarily work for another.  

      Nice to have the beach/ocean near you.  Would,nt standing under the shower  for some lenght of time, have the same effect?  There is salt in sea water and minerals, and I believe a minute ammount of gold!  

      Good uck,

      Anthea

      Report
    • Posted

      Maybe different fruits for different people? I don't think standing under the shower for a long time though is anything like staying in the clear ocean water. The ocean has a lot of salt. It has millions of things really. If you shine a light during night fishing you would not believe your eyes. If you look under a microscope  there is even more. I am no doctor, but I am saying it again, the ocean helps me greatly. I soak in it until my skin is wrinkled.  It helps me greatly. I hope it helps others. Thats all I'm saying.  Be well and have a great day.
      Report
    • Posted

      I live right on the beach, so I don't care how cold it is I will definately try this do not want steriod creams.

      Report
    • Posted

      I did hear that salt water helps skin issues. Someone I know who visited Jordan said that sitting in Dead Sea water helps skin problems. They sell the Dead Sea mud as well. Must be due to higher salt levels interesting.
      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up