No announcement yet.

Ocular cicatricial pemphigoid

This topic is closed.
  • Filter
  • Time
  • Show
Clear All
new posts

  • Tam5115
    I too have been diagnosed with this about 14 weeks ago. So far I'm using just steroid eye drops and see the doc again on December 4. He has talked about the suppressants but hasn't put me on them. He actually wants me to go to the Mayo clinic if at all possible. We will know more in December I guess. So far, it is just my eyes but I have other issues and no idea if they are related at all. Good days and bad days with stinging and itching and sometimes sharp pain.

    Leave a comment:

  • mrchigley
    Hi there. I've had OCP for over 5 years and I've been through the chemo after it taking over my entire body. I believe I was the first to take Rituximab to repair the CD-20 antigen and I remain in remission still, taking Mycophenalate to stay that way.

    You might lie to pass this article back to the lady in question. It's the best I found I have a private facebook group with 15 fellow sufferers from across the world if she ever feels like chatting in confidence.

    She might also like to talk to these people in the US, I know they offer coaches, super friendly bunch it seems and others have found them very helpful

    Leave a comment:

  • Rebecca Petris
    started a topic Ocular cicatricial pemphigoid

    Ocular cicatricial pemphigoid

    I'm posting below an email from a reader/customer of mine that I've talked to periodically over the past year. Her story is similar to many others I've come across, i.e. many months of suffering, never really getting answers for why she had so much eye pain, and eventually finding better palliative help to live more comfortably. However, she had a recent breakthrough in finally getting a diagnosis - in her case, a diagnosis that will lead to a very different treatment path. I had mixed feelings learning her latest - so happy that she had a diagnosis at last, but sad for the nature of the diagnosis. We agree her story should be shared in case there might be anyone else out there in the same boat.

    For a year, I have struggled with severe eye pain/dryness. Consulted 5 opthamologists until I found one who was willing to treat me. After 7 months of trying the usual treatments (compresses, doxy, plugs) she grabbed the arm of the clinic's "corneal specialist" and pulled him into the room to look at me. He knew immediately what my problem is and is the (only?) expert in this condition, which is extremely rare.

    The Opthamologic Cicatricial Pemphigoid disease was confirmed by a biopsy of tissue taken from the surface of one eye and sent to UCDavis.

    As explained to me, it is an auto-immune condition causing inflammation,ulcers and scarring of the mucous membranes of the body. In my case, thank goodness, only the eyes and surrounding tissues are affected.

    I know you communicate with many suffering people. My advice would be to urge them to keep looking and looking for medical help. Maybe prayer helps too--as I certainly did a lot of that!

    As I told you, I suffered an unspecified auto-immune ailment as a child--as did my son years later. There has been an almost unbelievable growth in knowledge and ability to diagnose and treat these conditions.

    For me (and my son) the treatment of the past was rest, aspirin, steroids. (And all the side effects of these).

    In contrast, the biopsy gave a precise diagnosis of the antibody involved--so that an appropriate drug could be chosen. Holsclaw has a very clear idea of a treatment plan for the next year or more.

    He is using drugs discovered from treating other conditions--immune-suppressant drugs used for transplant patients ( in more severe cases, cancer chemo drugs are used!). When the inflammation goes down and the disease goes into remission (as confirmed by biopsy) I will have extensive treatment for scarring, such as is used for victims of chemical accidents--also treatments derived from acne treatments.

    There is reason to hope that this rapid advance in knowledge will help many of the people you deal with.

    Yesterday, I had my three week check-up. I am tolerating the immune-supressant very well. Holsclaw estimated that the inflammation has receded 25%. I apply topical steroid drops and will start an ointment (compounded by Leiters) to treat the blepharitis. In six months, the biopsy will be repeated. He warned me that this could be a long road, with some reversals, but I am so relieved to know what has been plaguing me and to know that I am being treated appropriately!

    I get many compliments on my 7-Eye foam lined glasses from the nurses at the clinic. I tell them about your site.

    If anything in this letter can help someone else, feel free to share it. I am not well enough to have website conversations.