My today visit with an MD went good until he told me that I have deep corneal scarring on the upper side of cornea not in the line of sight. He mentioned that is caused by inflammation and there is no future worry. I was having a lake of tears in my eyes in his cabinet and his diagnostic was " seborrheic MGD". He suggested to stay on doxy as long as I need and to find the lowest dose that works for me.
I am very troubled about corneal scarring. Is this reversible? Anyone experienced this? I am wondering if I caused it by pressing hard with q-tips during my lid scrub.....
All best !!
Last edited by GeorgeT; 16-Mar-2010 at 22:51.
Dear George ,
I had deep corneal erosions/ulcers including in my light of vision. They healed on doxycycline (just like your doctor advised) combined with mild steroid drops and ointment.
Rubbing the eyes definitely may cause or aggravate them.
Scarring however means that you had ulcer/erosion, it healed on its own, and left a scar on your eyes.
Since the scar is not in your line of vision you really should not worry about it, as your doctor said.
There would be a reason to worry and start immediate treatment if you have an acute open unhealed erosion/ulcer.
You might want to verify with your doctor if what he means is just a scar from a healed on its own erosion.
Also, you might ask him if he sees any active erosions elsewhere in your eye. Do you experience pain when you rub your eyes?
Anyway, as far as I know from my experience and doctor's recommendations, a maintenance therapy with doxycyline prevents the occurrence of new erosions quite successfully.
P.S. If you are interested to know why you should be taking doxy indefinitely and how does it prevent erosions, there is a simple scientific explanation for that which I have posted in a thread a few days ago called "dry eye, inflammation, current treatments and the logic behind them".
Hope that was useful and not too overwhelming...
Thank you so much for your fast answer.
I am not rubbing my eyes at all, but I use a q-tip for lid scrub and usually press on eye lid quite a bit. When I am doing the lid scrub I don't experience any pain.
I read your post. Thank you for sharing valuable info. I missed your diagnostic though. Seems that restatis did all for you. It did not work for me. It burns very bad for about 8-10hrs.I tried it for more than an year. I am not sure what is burning : the cyclosporine or the castor oil. I read that restatis does not work well with plugs and I got 4 of them.You have also mentioned about having plugs. Do you still have them? 4 plugs? Or just 2?
Last edited by GeorgeT; 17-Mar-2010 at 01:21.
That's a great explanation, Ringo. I've nothing new to add, but I wanted to chime in, because I have corneal scarring in a spot in my left eye where I had Recurrent Corneal Erosions (RCEs) that at one point developed into an ulcer. It is in my field of vision, over my pupil, and creates a little of a problem that I usually can live with, though when my corneal dystrophy flares up, it seems that spot creates some ghosting that is more noticeable than I experience otherwise.
Glad that your scars are not in your field of vision, GeorgeT!
I had the same problem with Restasis! It began burning my eyes all day long! I was also wondering which component of the drop was causing the source of the problem; would be really nice to know. I have two plugs like you, so I wonder if the fact that the drops stayed in our eyes longer was the source of the burning? We could try a custom-compounded cyclosporine drop in another agent, but I'm kind of scared after my experience with Restasis. Have you tried any other compounded drops? I'm looking into this idea.
Thank you so much for your answer.
I am just wondering how could you fix all RCE's. Do you still have them? What is your regimen?
Originally Posted by liz56
I have 4 plugs because the pain with 2 plugs was very serious. I did not try other compounded drops. I am looking into this but I need to find a good doctor first.
Originally Posted by DryEyeSurvivor26
Restasis actually did not do anything for me... it was the compounded drops with increased cyclosporine concentration that improved my condition, but you should consult a doctor about them-- my condition was very serious at the time, and doctors actually wanted to put me on oral immunosuppressants.
restasis burns for different reasons: sometimes some drops burn due to the inflammation in the eye: for example my eyes burnt severely with anything, even non preserved artificial tears when they were severely inflamed. Burning however, could mean your eye is sensitive to a certain ingredient in the eyedrop. In that case you might benefit from a compunded drop without the irritating ingredient.
My doctor for example decreased the cyclosporine burning ( i mean resolved it) by recommening that I use a mild steroid drop/NSAID drop like Voltaren together with the cyclosporine; also the concentration in the cyclosporine was increased gradually.
However, a reminder-- all this happened in my case. Whereas it might be applicable to most sufferers as it was applied according to official protocols for treating dry eye, there might be people out there for whom these protocols would not work. Even in my case it took months to have lasting benefits from the treatment.
My eyes are plugged- 4 plugs. I used to (thank GOD used to) have very serious corneal erosions/ulcers. They were treated with FML drops, Tobradex ointment, restasis, doxycycline at 100 mg twice a day (first day was given 200 mg twice) for about 2 months; then I was on maintenance therapy with the FML drop once or twice a day and doxycyclin 50 mg twice a day.
That basically resolved the RCE's.
Again, the doxy and the steroids are a standard treatment for RCEs in dry eye, which as your doctor explained, result from tissue damage from the inflammation. (You don't need to rub your eyes to get them, but if you are prone to having them, better not rub your eyes). However, there are other diseases and conditions underlying RCE's in some cases, that might need additional treatments or a different approach. Your doctor has to decide what is best for you.
I hope that helps....
I have a blog here at the DEZ that chronicles a long, painful, expensive, annoying process of getting to a point to where I no longer had RCEs.
However, I am conscientious about maintaining what is usually a painful, fatigued, dry eye condition by using Dwelle every four hours, using Genteal Gel before I go to bed, sleeping while wearing TranquilEyes goggles, and trying to stay hydrated through the day. I also take fish oil supplements, synthroid, and have a very healthy diet.
I hope this helps!
Originally Posted by GeorgeT
Forgot to mention the lubricating gels and drops I use too! I sleep with a sleeping mask as well, that helps a lot.
Using the PC with goggles might also help...
Originally Posted by liz56
Hey GeorgeT I too have pretty bad corneal scarring in both eyes. My right is worse than my left. Luckily its not in the line of site but it has created a cloudy haze in both eyes. Right being worse than left. My scarring was a result of a case of viral conjunctivitis and case of Herpes Simplex I that almost occurred simultaneously. The end result was an immune system going bananas and causing a horrendous case of eye inflammation that is still occurring at this time. Severe dry eyes have also been a problem with this rare reaction. All the eye specialist that I've seen have all told me that its possible the scarring will get better once my immune system starts working normally again. Everything is dependent on how my body heals when it goes back to normal but they will never completely disappear. I don't care about the scars, I just want my fricken tears back. lol
I'm currently working with a specialist at the Scheie Eye Institute in Philadelphia that is going to be making a blood serum for my eyes. Just need to get a workup first from an endocrinologist and rheumatologist so she can see what my blood is doing and whether my androgen levels are too low. I did the serum a few months back while be treated by a couple of scumbags here in NJ, but it didn't work. According to this specialist, if the immune system is still attacking then a blood serum won't have any positive effects on the eyes. I'm curious to see what my body is doing on the inside as I've been receiving acupuncture for the past 6 weeks by an acupuncturist that claims having success with fixing immune systems. I look and feel a lot better so I'm hoping that's indicative of my body getting back to normal. I hope you recover soon my friend.
Your tear deficiency has resulted from the severe viral infections you had, as inflammation in the eye (any sort of inflammation) disrupts the neural signalling to the tear gland and it becomes neurally isolated (i have explained this in another recent thread in detail). Hopefully, when your body recovers from the infections and their repercussions, oyur tera glands will regain their function, as this sort of inflammation is self-limiting although it takes time.
A concern would be if the stuation stays dry for a long time, which might then lead to a dry eye inflammation, that is not self limiting like the vial infection inflammation.
I would suggest taking big doses of the supplement NAC and vitamin C,A, and E. When my eyes were at my worst, these things helped the healing of the ulcers (i was applying them in the eye as well -panthenol and retinol eye ointments). I think that would boost your immunity in the right way, and hopefully modulate its response to the viral infections. Also, as Herpes is simetimes recurrent, you must take supplements continuously and keep your body in the best shape possible; that keeps the infection away. There are antiviral supplements (NAC has strong antiviral properties)esp combined with vitamin C; both are very good for yeys. You might also take a strong eye vitamin supplement.
Talk to your doctor about stimulating your tears with somehting like pilocarpine, plus of course apply copisous lubrication; not sure if in your case at this stage of healing from the infection cyclosporine or steroids in the eye is recommended,you should ask a good doctor about that. Pilocarpine though will produce tears, and hopefully enough to keep the surface of the eye lubricated adn the gland functional while this whole thing goes away. In my opinion, that might prevent the settling of permanent dry eye vicious cycle.
Ask your doctor about giving it a try.
Bear in mind, initially it causes sweating and dizziness, for half an hour ater you take it only, as it stimulates also the sweat and salivary glands, just like it dos with the tear gands. You need to drink a lot of water with it, that makes it better. These side effects went away with some time in my case.
PIlocarpine substitutes the neurotransmitter acetylcholine which stimulates the tear glands and whose funcion gets compromised in eye inflammation.
Hope that helps...
I'm curious does the pilocarpine increase steady state tears or reflex tears?
PIlocarpine increases the steady state tears (the so-called basal tears); my reflex tearing diminishes when I take pilocarpine.
Before pilocarpine there were periods lsting from days to months, when my eyes would run rivers of hurtful horrible reflex tears and nothing woul stop them; people would constantly ask me why I am crying !
After I started taking it (may be about 2-3 weeks into the therapy) the reflex tearing diminished significantly.
I had a hard time tolerating the side actions (not effects as this is the direct action of the drug)-- the sweating, dizziness, chills, etc. which last for about half an hour after the drug is absorbed in the stomach. These went away after using it for some time. I started with 4 tablets a day, now I take one, or can go without it.
It is extremely effective when I use it with the cyclosporine drops or ointment- it keeps the eyes moist for a very long time, no need to instill any artificial tears even in adverse environments.
However, I must mention that it takes from a few days from a few weeks for the drug to achieve its full potential, as the tear glands are somehow unaccustomed to the stimulation in the beginning, plus the tissues of the eye are desiccated; so continous supply of moisture is needed for some time to see the full effects. Effect though is noticed immediately.
This whole treatment I had took me 8 months to achieve the state I am in now; though the dosage of everything I use has progressively diminished, while the concentration of the cyclosporine preparation has incresed. Doctor says if I continue to improve, I could be maintained only on 0.2% ointment eventually.
I hope the day comes soon! I am so tired of all this pain and struggle...
Thanks Dani, unfortunately this eye inflammation has gone on for 10 months. I've been using NAC, multi vitamins, 3000mg of Omega 3, Vitamin D, A, etc. You name it and I got in my body. My situation is unfortunately a bit different than others. With my immune system being screwed my different eye doctors believe that there is an active immune system response against the eyes. They've reported that this attack message will eventually stop, but its unknown when that will be. They told me that the longest autoimmune type response that's been documented is 14 years. I'm hoping the delicate balance of my body is regained soon. The oil glands in my eyelids are also clogged so I'm curious to see what the endocrinologist and rheumatologist have to say. I'm on Pred Forte made by Leiters and Istalol. I'm also taking Zovirax to fight off the herpes virus if its still active. And incredibly light sensitive with outdoor light. My acupuncturist has told me that this is due to severe neurological inflammation. So he's trying to bring that down the best way he knows how. I will bring up the Pilocarpine suggestion to. I'm curious to hear what my doctor has to say about that. My doctors keep telling me that we'll just have to see how my body heals after this immune system goes back to normal. I'm hoping for the best. Its still hard to believe that my body could screw me over like this.
Originally Posted by ringo
Its great they are giving you Zovirax while on the Predforte, as the steroid suppresses eye immunity. Your situation is a bit complicated, you have an autoimmune problem, which obviously needs to be treated with immunosuppressants, while at the same time you need your immune system at full capacity to fight off the virus.
I mentioned the neurological inflammation your doctor mentioned; in my opinion your eyes may be greatly relieved by pilocarpine; at least they will be better lubricated.
I really wish I knew anything more regarding your situation, but my knowledge when it comes to eyes is very limited to certain aspects of dry eye only.
Please let us know what the other specialists (rheum, endocr.) have to say about your condition.Let me know what doctor thinks about pilocarpine option.
You are in my prayers....
You've provided a wealth of information. Unfortunately it is not a common reaction. I was on an immunosuppresants for 7 weeks, after my eyes were blood shot red with inflammation for 3 months. It looked like at the time like someone painted both eyes with red paint. That aside, the drs tell me that immunosuppresants won't turn off the attack mode my immune system is in. Well at least its gotten better. Hopefully this is limited to a few people in the world. Just real bad luck. We'll see how it all heals up. I can't control the outcome so I'll just have to do the best that i can witht eh outcome. Thanks for the prayers. I'll keep everyone updated.
Originally Posted by ringo