I was recently looking on the internet for some more information on my illness, Ocular Cicatricial Pemphigoid (OCP) when I came across a social network webpage with a group of people who had OCP. I was amazed because it is a rare illness which usually only begins to affect someone when they are in their 60′s or 70′s.
Two years ago I was told that there was approx 300 people in the UK with OCP and I was the 2nd youngest but due to other medical problems the younger girl was unable to share her experiences with the doctors. I’d looked for a support group but there wasn’t any for OCP, although there was one for something similar. So you can imagine how pleased I was when I came across something almost like a support group and I joined immediately and shared my experiences. Unfortunately since then I have been unable to access the particular website as it rejects my username and password. Believe me I have tried and tried and tried again, reset my password, reset my username, and then reset my password again and again. I have even contacted the website and so far all they have done is reset my password for me – I’d already tried that.
Anyway that led me to wonder if there is anyone else searching for information on OCP and having a similar problem as me. If you are an OCP sufferer or have Mucous Membrane Pemphigoid then please do get in touch with me and share your experience.
Dear itsme! , I too have OCP. I’m in Arkansas, USA and I’m presently being treated by the University of Arkansas for Medical Sciences, Jones Eye Clinic. I’ve had cryosurgery to remove eye lashes from my right eye ( the effected eye ) and they have on cyclosporne 2% drops twice a day. Eye lashes started bothering me about 2 years ago with redness starting around 3 years before that-about 5 years now.
I’ve looked on the internet about OCP and just now Google found you. I’d like to hear more from you. John
Hi John
Thank you for getting in touch – I’m sorry to hear that you too have OCP. There seems to be more and more people being diagnosed – not sure if that is because more people are being affected or if it is more doctors are getting know about the condition.
Have you seen http://www.experienceproject.com/groups/Have-Ocular-Cicatricial-Pemphigoid/92731. This is the other site I mention in my blog. I have since re-registered and seem to be OK now with getting on the site now.
This is my history (copied from experience project)
“Hi, I am a 34 female who was diagnosed with Ocular Cicatricial Pemphigoid in 2003. I originally started with symptoms in 1999. Once I was diagnosed I was informed that I was the youngest in the uk to be diagnosed with OCP. I was also told that considering my age I had the worst scarring that they have seen. I don’t have any other involvement other than my eyes – which in some sense is lucky.
I have been on all sorts of different medication and finally seem to have found a concoction which works for me – prednisolone, Mycophnolate Mofetil, Dapsone and Immunoglobulin Infusions. My inflammation has finally settled and I have come off the IV Immunoglob, and am now slowly – very slowly – reducing my steroids.
Although my inflammation is under control I still have flare ups and they can be caused by alsorts of things from wind, sun, dust, heat, sand, eating/drinking lemon juice, preservatives in eye drops, and that yellow stuff that the hospital uses – practically anything really. It then takes ages to settle but then I guess you understand that.
Unfortunately, despite having stopped the inflammation I am still scarring. According to the London specialist, it can take upto 2 years for this to stop – 2 and half years later – I’m still waiting! My right eye is my worst one as that started first and I went undiagnosed for 5 years. Luckily I saw someone back then who knew that if the lower eyelid is a laid down ‘S’ shape then you probably have OCP. I’m so thankful that I saw that doc all those years ago. My left eye has also some involvement but nothing like my right.
With regards to pain I use artificial tears, steroid drops when required, antihistamine drops and a vaseline style eye drop. All these are ok but cause other problems too. For example the Duolube (vaseline stuff) makes white gloopy strings which hurt if not washed out with artificial tears. The tears make my nose run like mad and I get chapped.It is great to hear that there are others like me out there – of course not that you have ocp but that you are willing to share with others.”
My current situation is I am awaiting surgery on my right eye to remove the scarring and give it some nice new stuff via a skin graft – sounds delightful – I don’t think!!!!! I am managing without having the eyelashes burnt away as I pull mine out quite successfully. It sounds like they have a different treatment idea in USA than here in not so sunny UK – although I have heard of cyclosporne. Maybe I am a little complicated with what I can use because of being allergic to preservatives. Are you on any other forms of medication or just the ones you have mentioned.
How long have you been diagnosed for? Do you know much about OCP? I am willing to answer questions if you have some but I don’t know all the answers – I can only answer from the point of view as someone living with the condition.
I too have cicatricial/mucous membrane pemphigoid and I believe I may have left a comment below your post on Experience Project… I was diagnosed at 24 with the disorder after my eyes became so inflamed that I could quite literally, not keep them open. I have had the symptoms of the disease for much longer, since about 15 years old, but was undiagnosed for years due to repeatedly negative biopsies. I am currently attempting to attenuate the inflammation and I’ve decided to chronicle my experiences at http://www.girlwhocouldntcry.blogspot.com. Definitely check it out and tell me what you think if you get a chance! I’m curious as to whether the severity of my symptoms is common so I’d definitely love to hear another’s input.
I use/have used cyclophosphamide, rituximab, prednisone, immunoglobulin G, mycophenylate mofetil (CellCept), and flurometholone (steroid) drops/ointments. Things still aren’t under control for me yet but I hope that they will be soon. Here’s hoping we ALL reach remission!