helene

[Helene]

Hi,

I have had this probelm with my left eye for 8 months. Went to one specialist and he was convinced that it was ocular cicatricial pemphigoid. When the biopsy tests came back negative he more or less said go home and keep putting up with the pain. The pain in my eye was quite bad and I went to someone else a Prof. Once again I had another biopsy which turned out to be inconclusive but he still thinks I have the above disease. Getting treated with Dapsone 100 mg. and a few weeks ago had some plugs put in. They helped tremendously but I think one plug has removed itself (in the bottom). All this time I just felt it was a dry eye but I don't think my specialist thinks that because of the scarring in both eyes. The right one does not give me any trouble at all. Has anyone gone through this type of experience? I would love to hear from you. It has been debilitating and scary as they don't tell you any information at all. I have to see an Immunologist every couple of months for the Dapsone to see how it effects my body.

Hoping to hear from you.

[William53]

Hi Helene,

If you have the resources and opportunity I would encourage you to visit with a range of specialists to review your situation. And find - if you don't already have - a good, analytical primary physician you can bounce different diagnoses off and discuss solutions with. I've had people work on my car who were better analysts than some physicians.

My take on some specialists is that they view their patients through the lenses they've been trained to see through and that this limits what they're able to see. And this also can limit how other factors connect with their specialized recommendations. Our eyes are very complex; in my case I've got blepharitis, MGD and allergies in motion...maybe there's more. But I'm only just starting to understand core causes by exploring causes and symptoms with different experts.

Just my 2 cents. And best of luck to you.

[Helene]

Thank you for your advice. I have gone to about 5 specialists in all. Working up to the top one in the end. All this one says it takes time.

[Rebecca Petris]

Helene,

I'm sorry I couldn't reply earlier - I had to find some time to read up a bit as I'm unfamiliar with this. I'm sorry to hear of what you're going through!

Can you explain what all symptoms you've experienced? Is it eyes-only, or do you have any of the mouth or skin symptoms?

Whether you've got OCP or not, your eye are obviously very badly affected if you've already got scarring. One of the things I'd wanted to check was whether OCP is an indication for Boston scleral lenses - and it certainly is, according to the literature. I would strongly encourage you to look into it, and feel free to give me a call if you like (877-693-7939 x717 9-5 pacific time) or call the Boston Foundation for Sight. FYI, scleral lenses are like an oversized gas permeable lens designed to hold fluid over the eye all day, which creates a healing environment.

At any rate that is what I suggest you look into for its long-term possibilities since the OCP prognosis is not all that great. In the short term I think that there is probably a lot on this site that can help with managing discomfort. If you can tell us more about your dry eye related symptoms - type & how much you experience, day vs. night, we can make specific suggestions of techniques or products that may help you. The more info you can provide the more there will be for our members to relate to even if they do not have the same diagnosis, since there must be a lot of symptom overlap.

[Rebecca Petris]

p.s.

You say that the one eye does not give you any trouble at all - but do I understand correctly that both are scarred? I wonder if this indicates an "anaesthetic" cornea - where there is such nerve loss that you cannot feel the dryness and that is why it is getting scarred?

[Helene]

Hi,

Thanks for your reply. The specialists seem to think that my autoimmune system is working overtime. Hence taking the medication of dapsone. My symptoms in the beginning was that I had attacks of pain in the eye (not headaches) just the eye and it felt like something was moving around the eye. It felt like a razor blade. After the attack it felt like mush. There was mucus coming out of my eye as the lid was so dry it kept scratching the surface of the eye. I truly believe that the eye had no moisture in it and that is why the lid was doing the damage every time I blinked. I have now two plugs in the eye. One at the bottom which had to be replaced as it fell out and one at the top. I have not had any of these attacks but the eye gets a little sore now. Still feel I could do with a bit more moisture.

I think the next step is having it cautorised if the plugs don't work. What I don't understand is why have plugs if it can be solved with sealing up the bottom of the ducts. It seems a better option than constantly having plugs put in that disappear and getting them replaced. The top plug still irritates me a bit. That has been in there for about 4 weeks. I just hope it hasn't popped out and is scratching the surface of the eye.

It is a very debilitating process. You would just like to have one week of no eye problems. Wouldn't it be wonderful.

Thanks again for your reply. Perhaps mine is more complicated than a dry eye. Am not sure. PS. The other eye seems to have enough moisture not to bother me.

Helene

[Helene]

ocp

Hi,

Thanks for your reply. You are right. OCP has no wonderful outcome. However my only hope is that both biopsies (one negative and one inconclusive) gives me hope that it is not the above disease. You mentioned whether I have any other symptoms like dry mouth. No I don't. Nothing except the dryness of my left eye. I had another plug put in. The bottom one fell out or disappeared. I have two in there now. The specialist said he would perhaps cauterise the tear glands. I do have relief with two, however when he put in the second one after the first fell out I have not as much relief as I did in the beginning. It is quite sore in the mornings and settles in the afternoon. Luckily I am able to sleep without any problems. I don't think it would be bearable if that wasn't the case. What do you think about having them cautorised. Is it a good idea?? Is it reversible? Will it bring relief. I would have thought this would be better than coping with having foreign objects in your eyes. I can feel the top one constantly but the bottom one does not bother me. Anyone that can help me with this I would be most grateful.

Many thanks.

HELENE