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Chris17
Chris17 Member Posts: 175
edited March 2017 in Lymphoma (Hodgkin and Non-Hodgkin) #1

Well had a scan last week all is clear but, theres aways a but, i have now an auto immune disease called oral lichen planus, which is horrible ulceration of lips and inner mouth, tongue and cheeks, i have been dealing with this since end of Oct, i thought it was just a case of very chapped lips but it progressed in to the worst thing next to dealing with cancer i have ever experienced, doc said this is common for people who have comprimised immune systems, i cant eat very well, i have lost weight which that in itself isnt too bad, i could afford to lose a few lbs. I am trying to keep a sense of humor about this, its hard to do when you wake up every morning to having blood run off your lips onto your pillow, my lips bleed by themselves at any given time, i have it under control, but, theres that but again, i will have these "flare ups" the rest of my life. It really sucks that i cant just go out and have an enjoyable dinner out with family or friends, or go shopping, because i dont want to gross people out, it looks like i was punched in my mouth very hard or i have some catchy disease. I will get thru this like i did with cancer.

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  • yesyes2
    yesyes2 Member Posts: 591
    edited March 2017 #2
    The Latest

    Chris,  Oh my I can not tell you how sorry I feel for you having to now deal with lichen Planus.  I have been dealing with this condition, or what my doctors think it is, on my lower legs for about 3 years.  It's really awful looking and some days sore and painful.  Mine also sometimes itch, which can drive me up the wall.  If I scratch they can bleed really bad and become even more angry looking.  My Dermo also thought he saw some areas in my mouth which he thinks is the same think and what lead him to my diagnosis without a biopsy, I refused to do one.  I've always been thankful that mine has for the most part stayed on lower legs, at and below the knees.  I can't even imagine all you are having to go through.  I know even showing them to doctors, let alone people on the street is very difficult.  I have no doubt that both of us will get throught it.  For me it's just one more autoimmune disease in my history.  But it does get tiresome.  

  • po18guy
    po18guy Member Posts: 1,509 Member
    #3
    Transplant?

    Did you have a stem cell transplant? My mouth is being monitored for the same condition, due to Graft-versus-Host-Disease. Ironically, it is my wife's DNA in my son's (donor) cells that are causing me grief! Well, she would say that turnabout is fair play...

    I would think that the common immune suppression drugs would help, at least on a temporary basis. No one wants Prednisone, but if it provides some releif, it might be worth a try, at least during flareups. Or Mycophenolic Acid (M.M.F.), or maybe Methotrexate. You might ask, since these are some of the most benign of the immune supression drugs.

  • Chris17
    Chris17 Member Posts: 175
    edited March 2017 #4
    po18guy said:

    Transplant?

    Did you have a stem cell transplant? My mouth is being monitored for the same condition, due to Graft-versus-Host-Disease. Ironically, it is my wife's DNA in my son's (donor) cells that are causing me grief! Well, she would say that turnabout is fair play...

    I would think that the common immune suppression drugs would help, at least on a temporary basis. No one wants Prednisone, but if it provides some releif, it might be worth a try, at least during flareups. Or Mycophenolic Acid (M.M.F.), or maybe Methotrexate. You might ask, since these are some of the most benign of the immune supression drugs.

    No i never had a transplant,

    No i never had a transplant, i am using steriod ointments on my mouth, and nasonex which the doc said to spray on the inside of my cheeks, which has really helped, he took a biopsy of the inside of my cheek which hurt like crazy, i should have results by Monday to see if its worse than oral luchen. I also have patches of it on my legs but not as bad as on and in my mouth, i will ask what other treatsment and what meds are avaible for flare ups he suggests i should take, thanks for the response and good luck too you!

  • Chris17
    Chris17 Member Posts: 175
    #5
    yesyes2 said:

    The Latest

    Chris,  Oh my I can not tell you how sorry I feel for you having to now deal with lichen Planus.  I have been dealing with this condition, or what my doctors think it is, on my lower legs for about 3 years.  It's really awful looking and some days sore and painful.  Mine also sometimes itch, which can drive me up the wall.  If I scratch they can bleed really bad and become even more angry looking.  My Dermo also thought he saw some areas in my mouth which he thinks is the same think and what lead him to my diagnosis without a biopsy, I refused to do one.  I've always been thankful that mine has for the most part stayed on lower legs, at and below the knees.  I can't even imagine all you are having to go through.  I know even showing them to doctors, let alone people on the street is very difficult.  I have no doubt that both of us will get throught it.  For me it's just one more autoimmune disease in my history.  But it does get tiresome.  

    I totally agree with you it

    I totally agree with you it is VERY tiresome and bothersome,but it is what it is, i will just add this to the scroll of things im dealing with, im newly diagnosed but was MIS-diagnosed for 3 months, saw 4 diff docs, until i saw an ENT, he looked at me and knew what it was. I had a biopsy from the inside of my cheek it hurt a lot, but the pain didnt last. I see him Monday and should have results by then as to if it is worse that he thinks, i hope you can get relief and i know we will both get thru this, good luck to you and thanks for the reply!

  • Sal0101
    Sal0101 Member Posts: 136 Member
    #6
    What's next?

    3 different chemo's, a stem cell transplant and I'm happy.   I was however very nieve about any other side effects. Lymphoma was plenty!  Although I don't have any oral problems yet, I ended up with either pneumocystis or a late side effect from The Bendamustine. No solid answers! Boy did they move fast when I started having breathing problems. Po! High dose Prednisone to bring down the inflammation was the answer. Uggggg, I'm breathing much better, have tons of energy, not sleeping, and my face looks like the pillsbury dough boy(along with curly hair that's about 1 inch long)  I'm trying to weigh the good with the bad!!

    gosh, I hope there's not much more to look forward to! 

    Sharon

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