Lichen Planus of the mouth

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DDMom
Regular Member


Date Joined Apr 2010
Total Posts : 195
   Posted 5/15/2010 11:15 AM (GMT -7)   
 
  My husband has been living with Hep C for some time now but since October 2009 he has been having a mouth problem.  He has seen several doctors and the last one said it is Lichen planus brought on by Hep C and it's an auto immune problem and there isn't much you can do to get rid of it.  The mouth first looks like canker sores then goes to looking like the inside cheeks are rotting off and then it heals up to a point and then it breaks down again.  Have any of you experienced this?     He has used steriod cream for the mouth as well as rinses.  Was on  7 days of prednesone and it sent him into encephalopathy episode.  Anyway he is back to normal mentally but still has the mouth problem....Any suggestions? 
 
Thanks, DDMom

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/15/2010 11:33 AM (GMT -7)   

DD, has any of the doctors he has seen been a dermatologist?  According to my Taber's, lichen planus "usually occurs in otherwise healthy people who are emotionally tense."  I think I once had a form of it on the palms of my hands, which eventually went away.  That was quite a few years before hep C diagnosis, although I had already contracted it.  Has he been on antibiotics for an extended length of time?  If so, it could be a yeast infection that is caused by antibiotic treatment.  The only other poster I can recall with mouth problems is Charlie's wife.  She has autoimmune hepatitis.

The Taber's further states that treatment is therapy for the anxiety and local ointment.  "The disease is self-limiting but may last years, or recur."  I would have him see a dermatologist, if he hasn't already.  Also, provide straws for drinks.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


DDMom
Regular Member


Date Joined Apr 2010
Total Posts : 195
   Posted 5/15/2010 11:57 AM (GMT -7)   
Thanks Connie,

The dermatologist was the one who said it was Lichen Planus but he specialized in the cosmetic end of dermatology so we are going to go to a disease specialist next. I would agree that stress seems to be making it worse. He has been on the Xifaxan through a trial and the amount is doubled, I wouldn't think that would be the problem but might be, as it might be to much for him. He takes 550mg twice a day. I have chatted with Charlie and his wife's mouth problem is different but it's nice to know we are not the only ones trying to figure out strange things.
Thank you so much for your ideas and he will start using a straw and see if that helps.

DDMom

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/15/2010 12:21 PM (GMT -7)   

I have a feeling it's from a combination of stress and the increased Xifaxan dose.  Good idea to see an infectious disease doc.  Let us know what he has to say about the situation.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Charlie92
Regular Member


Date Joined Jul 2009
Total Posts : 192
   Posted 5/20/2010 6:08 AM (GMT -7)   
  mad My wife is still suffering from mouth sores, mainly on the inside of her lower lip, as well as chronic dry eyes. We have consulted with ear, nose and thoat specialists, mumerous dentisits, and an Opthamologist.  The ENT doc prescribed Evoxac, three times daily for her dry mouth, which hasn't helped. During her last visit with him, he just shrugged his shoulders, and replied that there is no cure for Sjogrens Symdrome, and he knew of nothing else to do.
 
The Opthamologist plugged her lower tear ducts and prescribed Restatis and she says she is getting some relief for her eyes, especially since I purchased a humidifier for our bedroom this past week.
 
Since her hepatitis is autoimmune, as well as  Sjogrens symdrome, her Gastro doctor suggested we consult with a Rheumatologist, and scheduled an appointment with one next week. Right now she is just grasping at straws in hopes of finding someone who can offer something to alleviate her pain and discomfort, as her quality of life really sucks. It is so frustrating to have her liver disease symptoms under control, but now to have these problems to deal with.  
 
I will  keep you undated, especially if the Rheumatologist has something different to offer. If he can't help, I suppose our last resort is to make an appointment with a dermatologist, as by then we have pretty well run the course of specialists.
 
Charlie
 

DDMom
Regular Member


Date Joined Apr 2010
Total Posts : 195
   Posted 5/22/2010 8:07 AM (GMT -7)   
Thank you Charlie,

We have an appt with the disease specialist Thursday and will probably be sent to some other specialist. We had a CVS pharmacy employee ask me is we have tried the Magic mouth rinse yet and I told her I didn't know what she was talking about. Well it's a combination of benadryl and predisone and malox and something else. Well we had some predisone and benadryl and malox so we made up a small batch and you know what it seems to be working. It might not of been the right thing to do but he isn't swallowing it, rinse only so when we go in on Thursday we will talk to the doc about it. That would be great if this solves the problem but we have gotten information that it might be stress with everything else.
Thanks everyone for you imput. I'll keep you guys informed as well.

DDMom

mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 5/22/2010 5:56 PM (GMT -7)   
DD,
 
My husband experienced for quite some time "breakouts" on his skin. He never broke out in or around his mouth, but we had a dermatologist as well tell us it was Lichen Planus. We came to find out that it was a form of vasculitis (which is a lovely side effect of the Hep C). When he broke out, it looked like these red welts all over his body and they were very painful. A rheumotologist tried to treat him with steroid treatments to keep it at bay, but he, too went into a psychotic episode with the steroid treatments. So, while he was in the hospital, his hepatologist called in a hemotology doctor and they started treatment of a chemo drug called Rituxin. Basically, it was to suppress the immune system, etc. After the 5 treatment regime of the Rituxin, we thankfully have not had anymore breakouts of the vasculitis. I would highly recommend you check in to this because from what I understand the vasculitis can manifest in many different ways. Hope this helps!
 
You hang in there!
 
Mer

DDMom
Regular Member


Date Joined Apr 2010
Total Posts : 195
   Posted 5/23/2010 2:47 PM (GMT -7)   
Thank you Mer,
I have printed out your post and plan on taking it with us to the doctor's on Thursday. The disease specialist is suppose to evaluate my husband and then send us in the right direction. I plan on giving him all the information we have gotten and hopefully he will come up with the right diagnosis so we can stop going from doc to doc and spend more time healing from what ever it is with the right medications. Thank you so much for your imput, it really has helped.

DDMom

mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 5/23/2010 5:16 PM (GMT -7)   
Good luck to you, DD....let us know how it goes!

Mer

DDMom
Regular Member


Date Joined Apr 2010
Total Posts : 195
   Posted 5/28/2010 8:01 AM (GMT -7)   
Well we made it to the appointment with the disease specialist and were told that his mouth problem is Lichen Planus and that 16 percent of patients with Hep C have it. It is an Auto Immune disease that will come and go and that stress does make it worse. There is no cure for it and it's difficult to clear up. The doc put my husband on Flovent a spray or inhaler that he will spray on the inside of his cheeks and mouth 3 times a day. The specialist was very nice and the visit went well, now we will hope and keep our fingers crossed it will work. The doc said if it doesn't then we are off to a Dermatologist specialist next. We have been to a Dermatologist already but he was a cosmetic one and not a disease specialist. We just want to be on the right track and using the right medication at this point as my husband has already tried quite a few medications and rinses so far. I thought the doc was going to put him on this Magic Rinse because it seemed to be working for him but he said it was to risky with his encephalopathy and that his mouth never completely cleared up with it. Yesterday was a busy day as my husband had a CT scan with dye and come to find out he is allergic to the dye so he had to go to the allergist first for special prep for scan. Anyway the scan got done and the appointment is over so we will sit and wait and hope for the best for now. We will keep everyone updated.

Thank you so much for all your imput and suggestions they are very much appreciated.

DDMom

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/28/2010 10:09 AM (GMT -7)   

DD, I'm glad you got confirmation of the problem and I hope that the Flovent works for your hubby. 

Please do keep us posted, and also let us know the results of the scan.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

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