Papilliary conjunctivitis?

[y-gwair]

Has any one had any experience of being treated for Papilliary conjunctivitis (NOT related to contact lens wear)? My ophthalmologist diagnosed this along with severe dry eye. The latter has responded very well to a combination of plugs/steroids (tear film/staining much improved, eye comfort much better during the day) but the soreness on the underside of the upper lids hasn't responded as well; last time I saw my specialist she said the papilliary conjunctivitis had improved but there were still 'mild papilliary changes' present (probably not helped by hypersensitivity to all lubricants and the preserved steroid drops).

I finished the steroid treatment just over 2 weeks ago, and the lid discomfort has got steadily worse again, waking me up early in the morning regularly, and making the whole eye surface burn for the whole morning. The ophthalmologist left me with another course of Dexamethasone to use if I felt the symptoms flaring up again. I've decided to use them, as I didn't feel we'd got on top of the lid inflammation last time, but I worry that as soon as I taper off again this time, it will just come back again. Are there any additional treatments that any one has found helpful? Already taking fish/flax omega 3 oils, and can't use any lubricants.

Just to be clear the papilliary conjunctivitis is a complication of severe dry eye in my case, I have never worn contact lenses which seem to be the most common cause of this condition.

[Sammy B.]

YG,

Did your opthalmologist say anything about a "follicular" reaction going on during this episode of conjunctivitis? Or just papillary?

I have recently been diagnosed with severe follicular conjunctivitis (origin unknown but I suspect we have a mold problem in the house), just wondering if your conjunctivitis is similar to mine.

Doctor prescribed doxy for me, no steroid or other types of drops.

Rose

[y-gwair]

No, just papilliary conjunctivitis (which was news to me, no doctor or optician had identified it before). Not sure of the exact etiology other than it is a side effect of severe dry eye, as well as occurring as a sort of allergic reaction to contact lenses. First noticed redness/small bumps under the lids over 10 years ago, had several flares of it but none as bad and prolonged as the current one.

[Sammy B.]

YG, I would probably explore the allergy side of things in your case. Do you know if you're allergic to many things?

Rose

[y-gwair]

No I'm not allergic to anything (ruled this out with tests when the same thing flared up 5 years ago, though nobody recognised the problem). Hypersensitive to all eye drops, which doesn't really help much either way. I assume it starts because of abrasion between lid and corneal surface, but somehow seems to keep its own inflammatory cycle going, adding to the total eye discomfort.

[Margaret]

same issue I think....

Hey there, I think I have the same problem. My eye docs just call it conjunctivitis, not really a particular type, perse. I had lasik over 9 months ago and they were hoping that as my nerves grew back over time, the tears would come in and the conjunctivitis would go away. It's not happening yet! I have tried Lotemax and Restasis (4 x a day) for a several months. Neither worked for me, it seemed to break up the tear film I had that seemed more protective than what I had with the drops. My lids feel full and uncomfortable all the time (like they have been in the bathtub for too long). They also said I showed minimal signs of rosacea in the upper lid (I had only one sign of many markers they look for - i think it was some sort of vascular sign, i can't remember what the doc said...

At any rate, lets stay in touch. I'm thinking of trying Doxy and/or Azasite. I tried Azasite early after Lasik and although I didn't think it did much, I'm in a much healthier place now and can assess it better!

Thanks,
Margaret

[y-gwair]

Could be! The underside of my lids are orange/red and have small bumps all over, with a constant burning sensation that just gets worse through the night. It worst on the inner corner of my right eye; that portion of the lid can get particularly puffy, and ballooned up when using gel-type lubricants. When the lid pain starts to flare up, the lid margins usually follow and start burning, then the soreness/inflammation spreads to the whole eye surface. I'm sure the lid lesions leak inflammatory substances into the eye, which then seems to set off a worse cycle of corneal dryness/inflammation.

I have tried Lotemax and Restasis (4 x a day) for a several months. Neither worked for me, it seemed to break up the tear film I had that seemed more protective than what I had with the drops. My lids feel full and uncomfortable all the time

Sounds familiar, I've given up using all kinds of drop as they invariably make things worse, even celluvisc particularly if used last thing at night. I'm trying another course of the topical steroid, but even the un-preserved version is making my eyes burn again. The only other thing my ophth. suggested was to try pilocarpine (saliva/tear stimulant) again, which resulted in immediate and very unpleasant tongue swelling/glossitis.

If you find anything that works, I'd love to know. I haven't had a proper night's sleep in for months, I just feel completely exhausted and drained by it all.

[y-gwair]

I found this...

Giant Papilliary Conjunctivitis
Papillae can range from small uniform lesions (uniform cobblestone appearance to irregular changes (nonuniform cobblestone appearance) to clusters of giant lesions with whitish centers that can ulcerate and stain with sodium fluorescein dye.
Originally, the papillae of the upper tarsal conjunctiva were thought to have to be at least 1 mm to diagnose giant papillary conjunctivitis.
Today, the clinical sign is generally accepted as follows: The papillae are at least 0.3 mm diameter on the upper palpebral conjunctiva in association with the classic symptoms.

...The antigens responsible for giant papillary conjunctivitis have yet to be identified. From circumstantial evidence, the initiating event is believed to be mechanical irritation and/or antigenic stimulus of the tarsal conjunctiva of the upper lids, perhaps by a contact lens surface or edge (rigid or flexible) or deposit, followed by histologic changes in the tissue (mast cell degranulation and typical secondary inflammatory cascade). This leads to conjunctivitis and further tissue changes and increasing inflammatory markers in the tears. Debris on the surface of contact lenses may be both a cause and a result, leading to a spiral of inflammation that causes more lens deposits to form, leading to additional inflammation...

The most commonly used topical medications are combination dual acting H1 receptor antagonists and inhibitors of histamine release from mast cells...Topical mast cell stabilizers, nonsteroidal anti-inflammatory drugs (NSAIDs), and antihistamines are also used. Steroids can be useful for severe cases...Giant papillary conjunctivitis primarily appears to be a Gel-Coombs type 1 hypersensitivity disease. The primary pathological event is inappropriate degranulation of the conjunctival mast cells, which release many inflammatory mediators, such as histamine (resulting in itch). Pure mast cell stabilizers are indicated for long-term use after the acute phase of symptoms is abated.

http://emedicine.medscape.com/article/1191641-overview

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Sounds like it may need a fairly long course of treatment to have any hope of getting it under control.

[Margaret]

UGH, none of that sounded hopeful at all. I keep thinking I would want to try a cream, or something systemic vs. a drop. I would think a steroid cream on the outside of the eyelid might help. I had Lasik 9 months ago. It's just strange to think that this just cropped up now. Why didn't I have problems before? Yes, let's keep in touch, I'm going to see an eye doc today, but I'm also considering visiting with an allergist or internist to try to tackle it from the inside.
Thanks,
Margaret

[y-gwair]

I had Lasik 9 months ago. It's just strange to think that this just cropped up now. Why didn't I have problems before?

It's probably been building up for a while, following on from increasing inflammation/abrasion cycle. I've had it for years at some level, don't know what it flares up very badly. Also tried temporarily increasing my immuno-modulatory drugs, which hasn't made any difference so far either.

[bp77]

UGH, none of that sounded hopeful at all. I keep thinking I would want to try a cream, or something systemic vs. a drop. I would think a steroid cream on the outside of the eyelid might help. I had Lasik 9 months ago. It's just strange to think that this just cropped up now. Why didn't I have problems before? Yes, let's keep in touch, I'm going to see an eye doc today, but I'm also considering visiting with an allergist or internist to try to tackle it from the inside.
Thanks,
Margaret

hi, I like to know what do doc say about ur lids that are swellen? do they think is going away if u get more tears? do u have mgd? I have my lids swellen and red, it looks like a red thick eyeliner on the lids and i do not have any allergy but i have mgd. I wish i knew how to solve this.

[y-gwair]

hi, I like to know what do doc say about ur lids that are swellen? do they think is going away if u get more tears? do u have mgd? I have my lids swellen and red, it looks like a red thick eyeliner on the lids and i do not have any allergy but i have mgd. I wish i knew how to solve this.

I think it's quite difficult to tell exactly what the problem might be from just a description, there may be more than one thing going on. Lids can swell for more than one reason too, so it's important to find the exact cause. You really need to find a good ophthalmologist, some of the signs of dry eye disease can't really be seen that easily without fluorescein/slit lamp examination, and are usually missed by general doctors.

Having more tears (e.g. after the insertion of punctal plugs) does not necessarily mean the problem will improve automatically (and can actually worsen the problem for some people); even with more tears/lubrication you may need additional anti-inflammatory treatment of some kind to get the symptoms under control.

[Margaret]

Well, just went to a local eye doc here and he said I have occular rosacea and MGD. He talked about people with MGD and how it looks like there is a red outline around their eyes, so bp77 I thought you should know this! He put me on Doxy at 100 mg 2x a day and then taper down to one time a day plus warm compresses and Systane Balance. i'll let you know how this goes, but let me know if you have any experience with this!

Thanks,
Margaret

[bp77]

Well, just went to a local eye doc here and he said I have occular rosacea and MGD. He talked about people with MGD and how it looks like there is a red outline around their eyes, so bp77 I thought you should know this! He put me on Doxy at 100 mg 2x a day and then taper down to one time a day plus warm compresses and Systane Balance. i'll let you know how this goes, but let me know if you have any experience with this!

Thanks,
Margaret

I was on doxy once a day now i am on 100 2x a day. I think it helps a little. I did not try systane balance because it has BAK. did u ask how u can get ocular rosacea after lasik? all my friends who did lasik are so happy with no problem.

[Margaret]

Lasik

I think we always have ocular rosacea, there just wasn't an environmental trigger before Lasik (except for maybe contact lens wear). Are your MG's atrophied at all (not working at all) or is there some oil coming out, or is it clear and good? Mine seem to be getting worse and worse, ugh.

Margaret