1. Community
  2. Skin and nails
  3. Lichen Planus

Oral Lichen planus and Cellcept

Posted , 10 users are following.

Kmcfatter
Kmcfatter

My Mother has oral lichen planus. She has had it for 4 years. She has seen the leading specialists in the country and none of them have been able to even get it under control. She has basically existed on oatmeal for these 4 years. Her doctor has just prescribed her the immunosuppressant drug Cellcept and she is on her 6th day of it. Has anyone taken Cellcept for this and what were your results? Thank you so much for any info in advance.

1 like, 29 replies

29 Replies

Next
  • patrick64832
    patrick64832 Kmcfatter

    Posted

    Hi, i too have OLP 5yrs now, i have used many Medications and Homeopathic meds to no avail, i have found a new med called LDN, low dose Naltrexone, ihave been using for the past 4 weeks and it has helped me a lot, it has calmed down my red fire and blisters in my mouth, i hope your med works for you, just google LDN , Low Dose Naltrexone to check it out, now the OLP is not gone completly but i am on an increasing dose so i hope soon to see a clear mouth...PG...thanks for your info, and good luck with youur Medication...P
    • Sasr24
      Sasr24 patrick64832

      Posted

      Patrick64832, I am curious as to how LDN is doing for you now that five months has passed since your message about taking it.  I am on Cellcept, and I just got my dermatologist to prescribe Naltrexone, but he didn't really understand the low dose concept.  He wanted me to start at 5mg and move up to 20mg.  I am going to stay on Cellcept and start the 5mg dose and see what happens.  After two months, I see him to reevaluate.

    • patrick64832
      patrick64832 Sasr24

      Posted

      Hi Sasr24, i am still taking Naltrexone and my dose has to be taken one hour before bedtime and the dose is 4.5mls , and the Dr who perscribed it said that if i take more than the 4.5mls it is not Low Dose and dosent work as good, it didnt stop my OLP but it keeps my flares from rising really high and also i have no problem sleeping, it is brilliant that Cellcept works for you i cant have it as i have a Mitral Valve replaced with a Metalitic one and the Dr is reluctant to let me use it, as i see it you are doing the right course and soon there will be an answer to our problem, i stay away from Nightshade family and Citric , also stress is a big cause of my flares, at present i have some differculty swallowing  but i manage so far and no Choking sessions since i started Naltrexone, i hope it works for you as for some people it is brilliant, i have to see another Rheumatoligist in 3 weeks time and if he has anything new i will reply to yoyr post with the result...patrick 
    • Sasr24
      Sasr24 patrick64832

      Posted

      Thanks for answering, patrick64832!  I'm glad the Naltrexone is helping you.  Cellcept has been helping me a lot, but it isn't going to be cost effective with Medicate next year.  The compounded Naltrexone was $125 for 90 pills.  Insurance doesn't pay for it, but it may be more cost effective for me to pay out of pocket for it.  I have trouble with Citric acids, also.  Too much and my LP/OLP gets worse.  I'll post a message after a few weeks of being on this dose of Naltrexone.  I will still be on Cellcept for a couple months, but I'm interested in whether my condition changes with Naltrexone. 

    • linda32054
      linda32054 patrick64832

      Posted

      Thanks Patrick, I'll look up LDN. I've never heard of it before. I'm glad you found something that helps you. confused

       

    • Tngerman2000
      Tngerman2000 Sasr24

      Posted

      Mycophenolate mofitil is very affordable if you use GOODRX

      400 (500mg) my cost 218

  • Sasr24
    Sasr24 Kmcfatter

    Posted

    Kmcfatter, I have been on Cellcept for two years.  It keeps my Lichen Planus under some control, but does not send it into remission.  It makes my life liveable.  I still have pink/red gums at times, and that lacy raw feeling in my cheeks.  I have a few of the spots on my legs, too.  But Cellcept has made it so much better.  I have had no side effects from it.  I understand it suppresses your I am very interested in those using Naltrexone, and plan to ask my doctor about it.
  • Tngerman2000
    Tngerman2000 Kmcfatter

    Posted

    Hello

       I've just run across this page and have had OLP for 4 years as well. I have been on Cellcept for 3 weeks and I'm curious as to how your mom is doing with this drug 

    thanks

    • mickie73244
      mickie73244 Tngerman2000

      Posted

      taken off after 3 months but did not help even a little. Nothing helps and it's worse now than it's ever been.

  • Sasr24
    Sasr24 Kmcfatter

    Posted

    Kmcfatter, Even though you didn't address your comment to me, I thought I'd respond to your question.  I have been on Cellcept (generic) for about three years.  It keeps my lichen planus in check.  Does it go away?  No, but my LP?OLP is so much better that I don't want to go off this drug.  I did try Naltrexone, but it did nothing for me.  The inside of my cheeks are still lacy, and I have to be careful not to eat spicy or temperature hot food; however, it is pretty much under control.  I have a flare up now and then, but after a few days it settles down.  Too much fruit or foods with acid seem to irritate it. 

    I hope you are having success with Çellcept.  Write back in a few months with an update.  Best of luck to you.

     

    • donna18720
      donna18720 Sasr24

      Posted

      was cellcept prescribed by dentist or another doctor?

       

    • Tngerman2000
      Tngerman2000 donna18720

      Posted

      It was prescribed by my ophthalmologist and dermatologist @ Mayo in Minnesota
    • Tngerman2000
      Tngerman2000 Sasr24

      Posted

      I forgot to add that I've only been on cellcept for 3 weeks

    • Tngerman2000
      Tngerman2000 Sasr24

      Posted

      My lichen is Esophagus , mouth, nasal cavity and eye involvement. Both Doctors at the Mayo Clinic decided Cellcept was the drug to use alone with 60 mg of prednisone. I was taken off of Dapsone which helped me to a degree

      Currently 2000mg mycophenolate

      60. Prednisone

    • mickie73244
      mickie73244 Sasr24

      Posted

      Kmcfatter is my daughter and I have the Oral Lichen Planuus. I took the cellcept for 3 mo. I was sick constantly. Another week and I would have been too weak to get up I felt like. My white blood count got so low and the Dr said if it did nothing in 3 mo. it wasn't going to help. It's worse now than it's ever been. Actually it has changed and it scares me. I will be going to Houston on Thursday or Tuesday to let him look..I've been tested for anything that would cause it and nothing. Stress has to be mine they think because of the passing of my daughter.

    • ret36913
      ret36913 mickie73244

      Posted

      I have had oral LP for over ten years now.  I am convinced that I got it as a result of taking statin drugs, and there is an article from the Mylan (sp?) School of Pharmacy at Duquesne University saying it can be triggered by heart meds, including statins.  I think, after much research, that after years of muscle problems and being prescribed a different statin each time I would have adverse reactions and take myself off them, they caused DNA damage and that is why nothing works to cure mine.  I am certain that sugar and chocolate aggravate it, along with stress and lack of sleep.  I find the LDN does not cure it, but keeps my level of inflammation down, per blood tests.  I have also read a study saying turmeric rinsed around the mouth can cure it in some cases, although you get an initial flare-up, and it takes about three months.  People with oral LP are known to have a deficiency of zinc more often than the general population.  I make my own milk keifer to keep the good probiotics in my mouth and body, or take probiotics containing BLIS K12 and BLIS M18, which are specifically for the mouth. This sometimes gives a little relief, but not dependably so.  Best wishes, everyone, and please post any remedies you may find to help.  I still think there is a cure out there.
    • Sasr24
      Sasr24 donna18720

      Posted

      I'm sorry I couldn't answer sooner.  Originally cellcept was being prescribed for me by a dermatologist (after 2 yrs. of searching for help); this year my insurance changed and my dermatologist doesn't accept my new insurance.  My general practicioner has agreed to monitor my condition and prescribe my cellcept.  He does my bloodwork twice a year anyway, so unless i have an issue, i won't need to see a specialist. 

    • Sasr24
      Sasr24 Tngerman2000

      Posted

      Hi!  If you can tolerate cellcept, please stay on it.  It took three months for me to begin feeling relief, six months to feel a lot better.  I still know I have it, but I can live with it now.  I've been on it for 3 years.

    • Sasr24
      Sasr24 mickie73244

      Posted

      Hi, I'm sorry you were not able to tolerate cellcept.  It has been a life saver for me.  I do believe stress is a big factor for any autoimmune disease.  Truly, there is nothing more stressful than losing a child.  I'm so sorry you have been through such a tragic event.  I don't believe stress causes autoimmune problems, but it's denfinitely a factor in controlling it.  I've had different autoimmune issues over the years, but Lichen Planus is the worst because it hasn't gone into remission.  My stress level is high due to caring for my husband who has medical issues, is bipolar and now has early dementia. 

      I've learned that acid is a no-no for me.  If I eat too much, my mouth gets worse.  I haven't noticed any other factors that affect it other than stress and acid.

      I hope you get some relief soon. 

    • mickie73244
      mickie73244 Sasr24

      Posted

      Good morning, happy to hear from you. My mouth throat and roof of my mouth are unbelievable awful. I took the Cellcept for 3 months and was sick after 2 new day but kept taking it. Lost 15 lbs and white blood count got very low so my Dr went ahead and took me off. And he said after 3 months of No change he didn't think it would work.. I've trie Prednisone which made it 10 times worse,Plaqeunil I was allergic to it..Just about anything they give for it I've tried and nothing works. I go to Houston Tx every 3 months of course they have done 3 biopsies on my tongue. Precancerous..I have burning mouth syndrome along with it..yeast is a huge problem..and now none of the meds are helping. I will be nuts soon..August will be 6 yrs and it keeps getting worse

    • Sasr24
      Sasr24 mickie73244

      Posted

      I'm so sorry you can't take Cellcept.  Though it took a while, it works for me.  Some people have had success with Naltrexone.  Search this site for information about it.  It didn't work for me.  There's a lot of information about diet changes, too.  Maybe that will help.  good luck to you.  We all need a break from this disease.

Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community 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 community 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.