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Been awhile

Chris17's picture
Chris17
Posts: 174
Joined: Oct 2010

It has been a while since i posted last, finally got this auto immune disease under control after being misdiagnosed for 7 months finally i know what im dealing with, oral lichen planus, which i will deal with the rest of my life. Last scan in Sept showed nothing as far as cancer, so i am 2 and half yrs in remission. Life has been throwing rocks at me but i keep moving forward, i hate this time of year holidays etc, my family is on west coast so it will be another quiet holiday here. Phone calls and text messages just arent the same. I am taking things one day a time, i cant allow myself to get stressed because it will make the oral lichen flare up and i dont want that to happen, i truly suffered with it. Hope you all had a good thanksgiving and i will post more often.

          

                                                                      Chris

po18guy
Posts: 880
Joined: Nov 2011

Great news that you are still in full response. I ask about transplant, as oral cavity problems are so common post-transplant. What does doctor propose for the lichen planus? 

Chris17's picture
Chris17
Posts: 174
Joined: Oct 2010

I am on steriods "ugh" i keep steroid ointment with me at all times in case of flare ups, Doc said i was the 2nd worse case he had seen, i would hate to see what the worst case was as i suffered horribly. I will have this the rest of my life, stress can cause a flare up within a matter of hours as it has happened before. The Doc also told me to  use flonase and spray onn the inside of the cheeks when i have a flare up, was a bit gross at first but when the relief came i got used to it. I am hoping that 2018 will a better year as 2017 sucked really bad, thank you for responding, hope you are well. PS no transplant for me.

po18guy
Posts: 880
Joined: Nov 2011

Am trying to get off them. Since transplant (haploidentical allogeneic) I have been on high dose prednisone for the past two years, due to graft-versus-host-disease. Started off at 95mg daily. That was, um, interesting. Down to 35 mg alternating with 5 mg every other day. I have an idea what bi-polar disease is like.

So, immune suppression/steroids is your primary treatment? Have you looked into a clinical trial? Not much to lose, as I see it.

yesyes2
Posts: 568
Joined: Jul 2009

Glad that you are getting some relief, even though it is through steroids.  I can not imagine what you went through as I know how sore and itchy mine can be.  Really hard for me to keep my hands away.  And like you my steroid cream is my trusty sidekick.  I have been lucky that it still is just on my lower legs.  Oral is questionable but it their pretty mild for me.  I am hoping that 2018 is a really good year for you.  Always nice to hear from you.

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