its GPC again, Margaret

sorry, old Ray Stevens reference :)

the most commented-on blog post ever on this site is from June of '09 about GPC:

http://myeyepod.blogspot.com/2009/06/gpc.html

there is a lot of bad info about GPC on the net. I am not claiming the be a GPC expert or anything, but I guess I think I know more about it than most. I treat it *all the time*. every week here in East Texas where the pollen count is sky high and the college students are wearing contacts way, way more than glasses.

some thoughts on GPC to add for 2011:

1) GPC is vastly under-diagnosed IMO. a whole lot of people who think they're "getting pink eye repeatedly" and whose doctors are even telling them this and Rx'ing antibiotics...a bunch of those are probably really GPC

2) GPC is poorly managed by under-aggressive docs. even when they get the diagnosis correct, which is IMO rare, putting some heavy contact lens wearing college student on Crolom & telling them "don't wear your contacts for a few days" is just not going to work IMO for so many reasons

3) docs are generally scared of prescribing steroids. well that makes treating GPC really difficult (impossible in some cases). pred forte causes cataracts (I've seen it do this). dexamethasone can cause glaucoma (I have also personally witnessed this). so docs are scared of it. understandable. its for those reasons that I don't use pred or dex for treating GPC. Lotemax is very safe. Lotemax is not the same as pred or dex (despite pharmacists telling patients otherwise occasionally).

4) treating GPC is expensive. there is no generic for Lotemax, its too new. dailies are the most expensive modality, and a BUNCH of Rx's are not available in dailies.

5) treating GPC takes patience. some docs & some patients just can't stick with it long eough to solve it

6) GPC can be permanent. some people never get over it. I have at least 2-3 patients off the top of my head that despite my best/most aggressive efforts we never made a dent in their GPC. they just have a hearty immune response. so for them...LASIK or glasses.

for all you who have GPC: good luck. hopefully you found a doc who will Rx you some Lotemax & put you in dailies. if you're getting a Rx for Crolom Patanol, you might need a second opinion.

Comments

  1. Long Time Contact Lens WearerFebruary 18, 2011 at 9:24 AM

    Thank you. I wrote a long post and then decided I'd better just stick to my point! This is useful information.

    ReplyDelete
  2. Anonymous has left a new comment on your post "its GPC again, Margaret":

    Question- Is it common for GPC to cause a discharge or would that suggest a diagnosis of conjunctivitis? I am a physician assistant in primary care and have seen several patients with acute conjunctivitis in the last month. Over that time, I have had irritated, red eyes with a mucus discharge 3 times (the last two times it has been unilateral in nature- I woke up this AM with my left eye matted shut).

    I am a daily contact lens user and, to be honest, I am unsure if I have not sufficiently de-contaminated my make-up, sheets, etc. or if this is just something else entirely (GPC has crossed my mind).

    In any case, I am SO sick of it! More than anything, I am worried that this may permanently affect my vision. Any suggestions?

    ReplyDelete
  3. yes, GPC can have discharge & "matting", and yes that confounds the diagnosis sometimes. what i always say is: if you're an adult heavy contact lens wearer, MOST of your eye problems are PROBABLY contact lens related. sure some of them have viral or bacterial "pink eye", but its more common to have ha contact lens related issue.

    if both eyes are "matting" & discharging by about the same amount, and its not HEAVY WHITE discharge, its probably not bacterial conjunctivitis. of course there are exceptions, but bacterial conjunctivitis is usually uniocular or asymmetric and usually has pretty gross WHITE or green discharge.

    it aint all that easy sometimes, tho to tell the differences, especially in the subtle cases.

    to answer your question tho: YES GPC can "mimic" bacterial conjunctivitis.

    ReplyDelete
  4. no conjunctivitis or GPC would permanently affect vision. and yeah, if its uniocular, that could bacterial conjunctivitis...

    especially if you're already in dailies...which is rare to cause GPC

    ReplyDelete
  5. Thanks so much for your response.

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  6. Hello! (I am the reader who commented above with the question about conjunctivits vs. GPC). If you don't mind, I would love your opinion on my situation. I am a contact lens user who was recently diagnosed by my optometrist with blepharokeratoconjunctivitis. He prescribed me two weeks of Zylet and Refresh rewetting drops and NO contact lens use. I recently saw him for my annual check up because I need new contacts. I have used Acuvue 2 with a base curve of 8.3 in the past. He "fitted" me with CIBA Focus Dailies and gave me 5 samples to try out. I noticed that they sort of dried my eyes out at the end of the day and sometimes were hard to remove at night but, other than that, I did OK with them. The reason I returned is because after my 5 days of samples I returned to my last pair of Acuvue 2 lenses and woke up the next AM with discharge and redness. I have three questions:
    1. Is it OK to jump from a base curve of 8.3 to 8.7 (the only BC offered with the Dailies)?
    2. Would Dailies be better for preventing BKC from coming back? I experienced a month of on/off discharge and irritation and I'm not sure if this was contact lens related or allergy related (I've never had a problem with allergies before this).
    Which brings me to my third and last question: what causes BKC and what can I do to prevent this from happening again?

    I apologize for this incredibly long comment but, for some reason, I can never think of my questions while I am IN the office with my optometrist.

    Thanks so much! Cait

    ReplyDelete
  7. "1. Is it OK to jump from a base curve of 8.3 to 8.7 (the only BC offered with the Dailies)?"

    probably. there's some leeway in fitting plastic soft lenses b/c they're so floppy (low modulus). i always say fitting plastic soft lenses is like fitting tee shirts. its not one-size-fits-all but some people could wear a medium tee or a large tee depending on how big/small they are. have to be pickier with soft silicone lenses tho

    "2. Would Dailies be better for preventing BKC from coming back?"

    IMO, probably. dailies is the safest modulus. thin, never re-wearing yesterday's (or 2 weeks ago's) protein/lipid/mucus, no chemical solution, high water content, etc etc

    "Which brings me to my third and last question: what causes BKC and what can I do to prevent this from happening again?"

    blepharokeratoconjunctivitis means all 3 are involved: lids, cornea, conjunctiva. IMO most of those cases are actually started by the bleph. so a good preventative in addition to switching to dailies is daily lid scrubs like this:

    http://www.amazon.com/Ocusoft-Scrub-Pre-Moistened-Pads-Plus/dp/B000NUTUCQ

    if the dailies are dry, maybe try ciba dailies aqua comfort plus

    good luck!

    ReplyDelete
  8. Hi!

    I was diagnosed with GPC in November 2010 (5 months ago) with a rating of 3.5-4.0 severity. The GPC was caused my the mechanical irritation of my toric lenses with my upper eyelids. Patady was prescribed but was ineffective.

    So then I was prescribed Lotemax for two weeks and in my follow-up appointment the GPC swelling reduced to a 2.5-3.0.

    A month later I went in for another follow up and the swelling/bumps had not gone down. So I was prescribed Lotemax for another week. At my third follow-up appointment there was no significant reduction in swelling.

    During my whole treatment, I have not worn contacts at all, out of fear of major swelling/pain returning.

    I am frustrated at how stubborn this is and I was wondering if I should continue using Lotemax on and off or for an extended period of time?

    Whenever I use Lotemax, any itching I have completely goes away and my eyes feel really good. Is it possible that all that remains on my upper eyelids are just scars of the original bumps/papillary?

    Also, would tea bags on my eyes help in any way possible?

    Thanks!

    ReplyDelete
  9. torics are tough b/c the toric-dailies are not particularly thin/floppy like a true "daily" is. THE WORST case of GPC I have ever seen was a high-cyl toric wearer.

    I have no problem with my own patients going off & on lotemax for chronic GPC. I guess I can't speak for your eye care provider

    it is doubtful that you have "scars" on the backs of your eyelids. more like the bumps are chronic, and they de-swell on anti-inflammatories, and re-swell when not.

    IMO tea bags are highly unlikely to help

    ReplyDelete
  10. When using Lotemax, what is the best way to put the drops in the eye for maximum effectiveness (if the bumps are lining the inside of the upper eyelid)?

    Thanks

    ReplyDelete
  11. IMO you don't need to do anything special. take the contacts out, drop in the eye drops. they'll get up there "under the upper eyelid".

    ReplyDelete
  12. How many drops of Lotemax do you recommend to your patients to use per day?

    ReplyDelete
  13. varies by patient & severity. 2-4x/day usually. whatever your eye care provider recommends, obviously

    ReplyDelete
  14. Is Loteprednol a generic for Lotemax? I found it on a few online international pharmacies.

    ReplyDelete
  15. yes Loteprednol is the name of the drug in Lotemax. there isn't a generic available in the US b/c of patent laws, so thats pretty interesting that those drugs can be made overseas/internationally

    ReplyDelete
  16. I had gpc really bad. Well it was 3.5/5 but caused to to stop wearing lenses. I tried patanol, steroid drops, changing lenses, hard lenses, time off, peroxide solution, everything. It's been four years and today I went in to talk to my doc about trying them again. He gave me some acuvue trueye to try. My eyes have been itchy since I put them in. He looked at my lids and said that he said only "small bumps" which are normal, he said. I was really hoping this time would work, since it's been four years, but this itchiness seems to indicate otherwise. I'm so disappointed! Laser surgery kind of scares me.

    ReplyDelete
  17. IMO trueye is not a great choice for GPC. its silicone...high friction & high modulus. i love dailies for GPC...but not silicone dailies.

    ReplyDelete
  18. Hello! Thank you for the wealth of information you have posted here on your blog on GPC!!

    I was diagnosed today by my optometrist. My eyes have been read and itchy for some time, but I blamed it on my allergies. My eye doctor told me I had it, told me to be more cautious when it comes to changing my contact lenses every 2 weeks, but didn't prescribe anything or tell me to stop wearing my contacts! She said I had a mild case, and my eyes instantly got better when I changed lenses, but they are very itchy by the end of the day.

    Is it possible that my GPC will improve by itself my ensuring I properly change my lenses every 2 weeks? OR should I go see another eye doctor and get a prescription/stop wearing my contact lenses? I wear Acevue lenses.

    ReplyDelete
  19. yes, its is possible that replacing your 2-week lenses on time could help/resolve a mild case of GPC. see how it goes & good luck! you might try some OTC antihistamines for the itch: ALAWAY by B&L is a good one.

    GPC is not dangerous, only annoying. i frequently tell patients with mild cases they can continue wearing soft lenses.

    ReplyDelete
  20. Thank you for your quick response!

    I really appreciate your help. Lame as it is, I was kind of freaking out yesterday, and your response makes me feel a whole lot better.

    Thanks a million!!

    ReplyDelete
  21. Hello, about a year ago i was dx with GPC and really have not been able to wear contacts consistently since. Prior to this I had worn acuvue 2 week lenses for 10 years without any problems. When first diagnosed I stopped wearing the contacts for 2 weeks and was rx'd xibrom drops. I then switched to acuvue moist dailies and within a couple months the gpc was back. The ophthalmologist recommended I see an optometrist for refitting. She told me the only thing to do was gas permeable lenses. I have had those since october and not only do I find them uncomfortable I feel I still have the same symptoms. Any advice on another type of lens to try? Preferably some type of soft lens...

    ReplyDelete
  22. I personally have never been a fan of gas perms for GPC, although that is a recognized & oft attempted therapy. just my own personal dispreference. i also personally do not believe that any NSAID like xibrom would work. dailies. steroids. thats my schtick haha

    ReplyDelete
  23. Thanks for such a fast response! Any particular daily you like? Or one you have found less likely to cause more GPC?

    ReplyDelete
  24. my personal favorite daily: ciba dailies aqua comfort plus. my LEAST fav daily for treating GPC: acuvue trueye

    ReplyDelete
  25. I'm looking up the ciba dailies right now and trying to figure out if they will fit me. I was previously fitted at bc 8.4 and dia 14. Will bc 8.7 be ok? I obviously have no idea how precise these things need to be.

    ReplyDelete
  26. this is a commonly-asked question. I have no idea, really. would need to know your actual corneal measurements. knowing that you used to have an 8.4 doesn't help us much. an 8.4 what? silicone lens like oasys? you'd really need to ask someone who has access to your actual corneal measurements, you know? I'm not trying to dodge your question, its just not really easily answerable.

    that being said...the lower modulus (floppier) the lens, generally the LESS picky you have to be with the fit. dailies are the lowest modulus lenses available.

    ReplyDelete
  27. sorry about that. the measurements were for acuvue 2 week lenses.

    ReplyDelete
  28. its ok, no need to apologize! acuvue 2 doesn't come in 8.4. 8.3 or 8.7. it doesn't matter - the question is still unanswerable. need to know what your actual corneal measurements are in order to make a prediction about what curvature would fit

    ReplyDelete
  29. yes i will have to find out the actual measurements. It was just acuvue. Not acuvue 2. I wore them for 2 weeks at a time and just realized that that was not part of the name. After that I tried 1 day acuvue moist at 8.5 and 14.2.

    ReplyDelete
  30. hi doctor! i have been diagnosed with GPC of a severity level 3.5+, and was put on Alrex steroid drops. i have been on them for 5 days and out of my contacts, but the OD said it was alright for me to wear contacts up to 8hrs/day as long as i kept using the Alrex. I have worn acuvue2 colors for 10 years now, but i have switched to dailies because of the GPC. I tried to put in the daily lenses for the first time yesterday and to my surprise, i could not wear them comfortably for more than 10 minutes. i was fitted for them at the optometrist's office which is why i am even more concerned. Is it the GPC, or the Alrex dry-eye side-effect (i've always had dry eyes and use Systane and Blink regularly throughout the day) that's making me tolerate my lenses even less than i could tolerate them prior to starting the Alrex? Before the steroid drops I could wear my lenses 6-8 hrs/day comfortably- i didnt even know i had GPC! But now, after 5 days on the Alrex, i cannot even wear contacts for 10 minutes. What is going on with me? i am scared i'll never be able to wear contacts again. I am also not a candidate for Lasik due to my high myopia (-9 in both eyes) and very dry eyes. i want to look into ICL though i know that procedure is very expensive. Any insight on the GPC/contact lense wear?

    ReplyDelete
  31. It's the gpc, not a side effect of the alrex. No 3.5+ grade gpc would be gone in 5 days. More like 5 weeks. Gotta stick it out. It's not concerning that your new dailies are not comfortable. It's expected.

    Yeah every gpc sufferer says they wore their lenses for x number of years and never had a problem. Sorry, it's just the way gpc is. If you really were grade 3.5+ you should expect weeks, maybe months before lenses are tolerable

    ReplyDelete
  32. I was having several issues with my contacts for a few months. The comfort just wasn't the same. After weeks and weeks of trying different things, I got a second opinion and was told I have GPC. I am on Lotemax right now, I don't notice too much of a difference yet but do understand it will take time. My question is what are the symptoms of GPC? My right eye feels like I have GPC the worst, it's a little blurry and cloudy from time to time and there can also be a little glare. Can this be caused by GPC? Thanks!!

    ReplyDelete
  33. the symptoms of GPC are (unfortunately) pretty much the same as a lot of other eye conditions: contact lens discomfort, blur, itch, redness, discharge (usually sticky)

    ReplyDelete
  34. Can GPC cause floaters? If not is there a way to get rid of them or at least make them not so annoying?

    ReplyDelete
  35. GPC does not cause floaters. No, there's no way to get rid of floaters or make them less annoying

    ReplyDelete
  36. Are floaters pretty common some of the things online I've looked up scare me about blindness? Ahhh!!!

    ReplyDelete
  37. floaters are SUPER common & the vast majority of people with floaters do not have any risk of blindness.

    but

    If you're scared...get an eye exam

    ReplyDelete
  38. Can a side effect of using Lotemax be headaches? I started the eye drops on Thursday July 21 and by Saturday I started to get a headache that has kinda stuck with me.

    And what can I take to help ease it?

    Thanks for your help!!

    ReplyDelete
  39. no, its unlikely that the Lotemax is causing your headache. and I guess treat your headache the same way you treat your headaches normally - most people use OTC analgesics or NSAIDS like aspirin, tylenol, ibuprofen, etc

    ReplyDelete
  40. I did just talk to my eye doctor and he said the same thing. Most likely it is something with me since I havent been feeling too well. I am going in Monday for him to check my eye pressure just to make sure the Lotemax is not causing any issues. Eye pressure going up with Lotemax is not coon he said but just wants to be sure. Hopefully my eyes are okay.

    Buy I have to say this is a great post and I'm glad I came across it since now I don't feel along dealing with GPC and that its not that serious of a problem, this has brought me some relief!! :)

    ReplyDelete
  41. I'm a little confused so my eye is blurring and cloudy from the GPC, just trying to understand what I have read?

    ReplyDelete
  42. Well, GPC causes blur, so yes it could be GPC causing your blur

    ReplyDelete
  43. I suffer from severe GPC, even daily disposables cause pain in my eyes after removing them. I tried steroids and antihistamines, but both were ineffective. I'm also scared of steroids, so I discontinued the treatment.

    I found a research claiming that Protopic Tacrolimus ointment 0.03% can cure GPC within 2 weeks!!

    http://www.ncbi.nlm.nih.gov/pubmed/18216583

    I want to try this therapy, but I don't know how to apply it on my eyes. Is Protopic safe anyway? Do you recommend it?

    ReplyDelete
  44. Tacrolimus ointment 0.03% in the eye for treatment of giant papillary conjunctivitis.
    Kymionis GD, Goldman D, Ide T, Yoo SH.
    Source
    Department of Ophthalmology, Bascom Palmer Eye Institute, University of Miami School of Medicine, Miami, FL, USA. kymionis@med.uoc.gr
    Abstract
    PURPOSE:
    To report a case of refractory giant papillary conjunctivitis (GPC) treated by using topical tacrolimus 0.03% ointment.

    METHODS:
    A 16-year-old white boy with a history of GPC was referred to our department for severe GPC with eye itching, tearing, photophobia, discharge, and blepharospasm. The patient had received previous treatments with antihistamines, mast cell stabilizers, topical corticosteroid ointments, and surgical resection-cryopexy of GPC that were ineffective.

    RESULTS:
    Topical tacrolimus 0.03% ointment (Protopic; 0.5 cm) was applied into the lower fornix twice a day. An improvement of the patient's symptoms was observed during the first 5 days of therapy, and the GPC was resolved within 15 days. After 1 month of continued topical tacrolimus ointment treatment, there was no evidence of GPC. Topical tacrolimus was tapered during the next 2 months. Six months after treatment, there were no GPC findings, and no side effects were reported.

    CONCLUSIONS:
    Topical tacrolimus 0.03% ointment for severe GPC, refractory to conventional therapy, appears to be an effective alternative treatment.

    ReplyDelete
  45. thats very interesting! thanks for the link & the question. I have not heard of or used that therapy. as for application, the abstract states: "applied into the lower fornix twice a day"...that means squirt out a 1" "line" of medication from the tube onto your finger, pull down the lower eyelid & "wipe" the medication off into the sac created when you pull down your lower lid.

    ReplyDelete
  46. Hi,
    I was diagnosed wiht GPC 6 months ago. I was given steriod eye drops, stayed off my contacts for a few weeks and changed my bad cleaning/changing habits. Things have been fine since. A couple of months ago I moved to Vietnam and the other day I noticed I had sore eyes and a slight hemorrhage in my right eye (the same symptoms that led me to go to the optomotrist at home 6 months ago). Today I went to a ophthomogist here in Vietnam and tried to explain my history and what i wanted checked. (I'm not sure how well the communication got through though). The woman looked at my eyes briefly and then under my eyelids. I (think)i was then told that i dont have GPC but when i asked what i do have she wrote done 'conjontival' (??) anyway i edned up being perscribed Sanlein 0.1 (sodium hyaluronate 0.1%) and Oflovid (ofloxacin 0.3%) and to come back in a week.
    I'm deffinietly no expert, but to me it sounds like I've been diagnosed with bacterial conjunctivitis. You said that the symptoms for both were similar and if i do have GPC and not bacterial then i really want to be on steriods as soon as possible (i'm going on holiday to thailand in 2 weeks). Do you think its more likely that i have GPC and what would you suggest i do? Thanks for a such informative post!

    ReplyDelete
  47. yes ofloxacin is an antibiotic, so she is treating you for bacterial conjunctivitis, probably. here's what Ialways say about bacterial conjunctivitis:

    if its bacteria, and you start using antibiotics, it should be 90% better in 48 hrs and TOTALLY GONE in 72 hrs. if its not TOTALLY COMPLETELY GONE in 72 hrs...then it was never bacteria in the 1st place. I go round & round with these non-ophthalmologist MD's sometimes over this. they'll have you back in a week, announce that its not gone yet, and keep you on antibiotics another week, or even change it to a "more powerful" antibiotic. sigh.

    so how about this: try her therapy for 72 hrs. if its TOTALLY GONE, then she was right: it was bacterial conjunctivitis. if its not gone OR if you put contacts back on & it immediately flares up again...then you're probably right, this is inflammatory (not infectious bacteria) and its probably your GPC flaring up again. I personally think that's likely anyway based on your description, but I didn't see it myself so I guess we have to give the Vietnam doc the benefit of the doubt...for 3 days anyway.

    and then yeah if its not better, you probably need steroids instead. is there any way you can switch to dailies?

    ReplyDelete
  48. Hi! I also have problems with my eyes! I've been wearing semi-rigid lenses (gas permeable) for 14 years and one day (last month) my eyes started to burn as soon as I put my lenses on (and days after I took them off). I went to see the optometrist and she said my lenses had too much deposits on it and that I had big papillas under my eyelids. However, she never mentioned GPC. She prescribed me Alrex 2xday and ordered new rigid lenses for me. But I have the same burning sensation with the new ones + Alrex. Since it never itches, just burns, do you think that it really is the papilla thing that make my eyes burn that much. Now I'll be off lenses for 3 weeks + Alrex 4xday. I don't have much hope it will help... She said the next solution is soft lenses... Again, not sure it will help since rigid lenses are supposed to be better. My eyes are -11.25 and -8.5...so dailies are not an option, neither Lasik.

    ReplyDelete
  49. " I went to see the optometrist and she said my lenses had too much deposits on it and that I had big papillas under my eyelids. However, she never mentioned GPC"

    well even if she didn't say the term "GPC", when she says "big papillas under eyelids", that's GPC.

    "Since it never itches, just burns, do you think that it really is the papilla thing that make my eyes burn that much"

    probably. don't read too much into the symptoms, whether it "burns" or "itches" or whatever.

    "She said the next solution is soft lenses... Again, not sure it will help since rigid lenses are supposed to be better"

    I have seen that written on the internet as well, but I personally disagree that "rigid lenses are better for GPC."

    "My eyes are -11.25 and -8.5...so dailies are not an option"

    1-day acuvue & 1-day acuvue moist both come in -12.00. that's your best bet IMO

    ReplyDelete
  50. Hi, I had acute conjunctivitis about three years ago, and was only able to wear contacts off and on for a few months before I just couldn't wear them anymore. I haven't been able to wear them for more than an hour without them feeling sticky and giving me headaches. I went to an ophthalmologist and he said I was probably just allergic to my contacts and that I'd possibly never be able to wear them again. I was prescribed fluorometholone when I first recovered from the conjunctivitis, and that helped me wear contacts for those first few months. I tried almost every type of contact and have had no luck. Do you think I should talk to my doctor and see if I can try the Lotemax & Ciba dailies? Or do you think that, since it's been so long, my eyes might be beyond fixing now? My eyes are -6.75 (both eyes) and I am dying to get out of my glasses! Thanks for your help and for writing this blog; so informative!
    -Lynne

    ReplyDelete
  51. Ok you have inadvertently touched on one of my pet peeves, so pardon me for a few seconds while I step on to my soapbox:

    I hate it when doctors tell patients they're "allergic to their contacts". This does not exist in medicine. There is no such thing as being "allergic to contacts". I don't know exactly what you had, but I can tell you what it WASN'T: it wasn't "allergy to contacts". Ok sorry...now that that is over haha...

    "Do you think I should talk to my doctor and see if I can try the Lotemax & Ciba dailies?"

    YES if you want to wear contacts again, that is the most likely way to have success IMO

    "Or do you think that, since it's been so long, my eyes might be beyond fixing now?"

    IMO that is unlikely. the people who have GPC usually have it chronically/repeatedly. usually if they start wearing contacts again, the GPC just comes back again quickly.

    ReplyDelete
  52. Oops I misread the last part of your comment...sorry. You asked if your eyes are "beyond fixing". It is possible that dailies & lotemax might not make you able to wear contacts, but there is really no way to know w/o trying. I hesitate to say you're a "lost cause" tho haha

    ReplyDelete
  53. Hi, I have GPC and couldnot wear lenses so I decided to get a lasik. Its been about 10 months now (after my lasik) but it seems like the GPC doesn’t really go away! My eyes get sore from time to time. They burn, especially on the lining of the upper eyelid. Also, they’re always very dry and sensitive. I cannot stand wind and sunlight. Before I get my lasik, my doctor usually prescribes me a steroid drops and an antiallergic drops (disodium cromoglycate) when I have the symptoms. After my lasik, he still gives me a steroid drops at first when I go see him, but later he says he doesn’t want to give me the steroid drop. I have been using that antiallergic drops from the beginning and just changed to Patanol a few months ago. I also use a lot of tear drop (both liquid and gel) these days. I just don’t know what I should do. Is it normal like this? Is Patanol the right thing to do? Should I ask for the steroid drops and use it for a while? I just thought that without lenses it should get really better.

    ReplyDelete
  54. "Is it normal like this?"

    no, that's not "normal". but it may continue to be the case for you...

    "disodium cromoglycate"

    that's 1970's drug technology. the Patanol is loads better.

    no doc is going to want to leave you on steroids very long, especially of they're prednisolone acetate, dexamethasone or FML. but you probably need to be on steroids long term. do you have access to a drug called Lotemax? that's what I'd do. course if you're overseas this may be really difficult.

    this is probably not going to be easy to solve, especially if you can't get your hands on any Lotemax

    ReplyDelete
  55. Thank you so much for your response.

    So.. I should continue my Patanol right?

    I think the doctor used to give me FML. But what's the different between FML and Lotemax? Is Lotemax just safer for a longer term use?

    I'll try to find Lotemax myself. If i can get it, how long you think i should try using it? And if not, is there any substitute?

    ReplyDelete
  56. the chemical make up of FML is totally different than lotemax. they're absorbed different ways, and work different ways. lotemax is much, much safer for long term use, but that is not the only difference. for GPC lotemax works way, way better. no, there is no "substitute" for lotemax. it's expensive, too.

    your doc will have to write you an Rx (unless you're not in the US, which I suspect is the case from the drugs you mentioned) in which case I don't even know if you'll be able to get lotemax at all.

    since you're not my patient I cannot tell you how many times a day to use it. but for *MY* GPC patients I usually start out at 4x/day for a week or so, then 2x/day for a long time...weeks or maybe months depending on what it looks like on the follow ups. some people are on it indefinitely

    ReplyDelete
  57. Yes right im not in the US. I hope i'll be able to get the lotemax :( Thank you so much for your help.

    ReplyDelete
  58. Hi!
    Can I just say this is the most helpful page I have ever encountered? I had GPC for a year, no contacts. Got rid of my cat, condition improved and wore contacts comfortably, daily, for a about a year. About three months ago it returned. I discontinued contact wear (aside from once a week on nights out) and did two rounds of lotemax. My eyes are no longer red, and if I wear my contacts for a short period of time, they are mostly ok. However, I would really like to get back to daily wear. I can't use dailies due to my very high prescription, which also means I don't see as well out of my glasses.
    My doctor has now prescribed Restasis, as well as Lotemax drops as needed in case of a flair up. My main symptom aside from redness was dry eye, and I was using Systane 3-4x a day. Do you think this will help? I have begun the treatment and am following up in a month with the dr. Just curious as I had not read anywhere about Restasis as a treatment.
    Again, thank you for this resource!!! Nice to know there are others out there suffering with me!

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  59. "I can't use dailies due to my very high prescription"

    yes this is tough. this also likely makes LASIK not an option.

    "My doctor has now prescribed Restasis, as well as Lotemax drops as needed in case of a flair up. My main symptom aside from redness was dry eye, and I was using Systane 3-4x a day. Do you think this will help?"

    ok I don't think I have ever blogged about this but I probably should. I personally believe that using Lotemax and restasis TOGETHER long-term is probably worthless. one or the other. both doesn't work. there is no additive effect b/c they're both "anti-inflammatories".

    also - restasis is for dry eye. not GPC. I don't know if I personally would mess with restasis at all unless you have DRY EYE. it's not going to do anything for GPC IMO

    good luck! these are the toughest cases: GPC, can't have dailies b/c of high Rx. there often is no fix besides glasses...which as you mentioned can have inferior optical quality in high Rx's

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  60. I have thoroughly read both of your GPC blog posts and ALL of the comments. I think I only saw one comment that talked about the possibility of allergies. Here's my deal: I had what I thought was pink eye on and off for a month or two (super pink eye and crusty). I finally went to the eye doctor in July and he gave me steroids but didn't tell me that I had GPC. He did tell me to stop wearing my contacts though. So I stopped entirely. My eyes didn't feel better though, just mainly bothersome and red, so I went to another eye doc. He told me I had GPC and told me to continue with the steroid for a month or so (I don't remember which one....) and gave me Pataday and told me to come back in for a checkup. I stopped the steroid but continued the Pataday and waited about 2 extra months before finally going back. I was then given trials of Lastacaft and Bepreve to see which I liked better, since the doc said the Pataday wasn't helping me at all. I chose Bepreve because I could take it twice a day and my eyes felt better right after. But my eyes still feel super dry a little while later (the a/c or heat on in the car KILLS me!) and they burn. Is there a chance that all of this could be an allergy that I'm not aware of? I clean houses for a living (I don't use harmful chemicals, mostly baking soda and dish soap) and I am around all sorts of animals, dust and molds every single day. I am seeing a new eye doctor on Monday (I was recently switched to Group Health and they won't let me see their allergist until I see their eye doc first....). Should I push them on getting me allergy tested? I feel liked my eyes should be better by now. I have been super good about never wearing contacts and taking my eye drops regularly. I previously had been wearing Air Optix for probably 6 years. I will admit I was TERRIBLE about caring for them. I figured one day it would catch up to me and this might be it!

    Btw, I am amazed that a doctor exists that gives free advice on a blog! That is absolutely amazing! And soooooo helpful. We need more of you in the world. It is really hard to be a patient and to rely completely on your doctor.

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  61. Oh and one more thing, I read in one of the comments about using an ointment that is normally used to treat eczema. Have you heard anything more about that route? I would give almost anything to be cured of this in as little as 2 weeks!!!

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  62. I am about to show my biases (again!) But IMO "allergy testing" is worthless in cases like this. Allergy testing is for food allergies and trying to prevent life threatening anaphylaxis. Besides, we already know what the problem is: its the air optix. You need plastic dailies.

    All of those symptoms you listed in your history are all the same problem that never got fixed. You need to get out of silicone.

    Tell your new eye doc you want lotemax and plastic dailies. If it were me I wouldn't bother with the allergist

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  63. And yes - this is allergies. Probably seasonal, since you said you stopped wearing contacts. Cases like these usually need longer term steroids IMO. Going a few weeks then trying yo switch to antihistamines like bepreve doesn't *always* work. Some patients need steroids for months and months...even chronically. lotemax is very safe long term. Pred and dex are not...

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  64. Hi,

    I'm a medical resident and wore contacts in my teens with no problems what so ever. I had an eye infection when I was 18 and had a short course of tobradex and ever since then I've had difficulty with my contacts. I have moderate dry eye in both eyes (have had plugs and cautery done) and now my tear film is acceptable. Ive worn Focus Daily Colors for the past three years with moderate comfort (at the end of the day I'd have eye pain) w/ a few courses of GPC that was treated with Pataday; In the past month, I'm finding complete intolerance to contact lenses. I've stopped wearing the high water content Focus Daily Colors and switched to Accuvue TruEye...The comfort is better but still feeling a lot of eye pain at the end of the day.
    .
    I'm going to stop wearing my contacts for the next 7 days and try a combination of Lotamax and Pataday. I'm think of the CRT (Paragon) to be worn at night and to free me from daily contacts; Issue is my power is -5.0 OU and I've heard I may not get 20/20 vision with this approach
    .
    Are there other contacts you would recommend instead? or other possible therapies? Thanks!!

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  65. Hi!
    I have been wearing soft contacts for a couple of years and have had no problems. I don't take them out at night like I'm supposed too and only change them out when they start to bother me a little. If I put new ones in it feels great but when I let my eyes rest and wear my glasses my eyes feel gritty and uncomfortable. After a few days I can't wait to put my contacts back in because it feels so much better. Does this sound like GPC?

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  66. How do you feel about proclear dailies for GPC sufferers? About a year ago I tried the ciba vision dailies but for whatever reason they were 100% unbearable for me. I've been dealing with this nonsense for 4 years.. It's been come & go but in the past year it seems to bother me daily even with daily glasses wear, saving contacts for special occasions maybe 2x/month. I have a giant bottle of lotemax and I'm going to begin another round of daily drops in hopes to wear my contacts at graduation in 2 months. But back to my original question - proclear dailies?

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  67. Proclear dailies: fine. Only dailies I don't like with gpc are SILICONE dailies like acuvue trueye

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  68. , from last three years im wearing contacts wid no probs. bt from last two months my right eye gets blurred and I have to blink and rub eyes all the time to make vision good. I never had any kind of similar problem with glasses, but I would prefer lenses.my doc gave me vigamox. as he told its infection.bt it dint work.when i wore my lens after 4days..problem was same. pls tell me wot to do im from india.delhi.

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  69. yep...the reason the Vigomox didn't work is b/c that sounds exactly nothing like "an infection".

    you likely have GPC and you're posting in the correct place. you probably need: dailies and steroids. not antibiotics like Vigamox

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  70. oh thank you sir. i got my answer in the same day.you r so quick to help.realy. so by saying dailies u mean?

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  71. so i need to be treated wid lotemax for my right eye? for gpc. my right eye is not pink neither red. it looks normal as left eye. but prob is only its giving blurred vision after wearing contacts.and iv to blink to correct vision

    arvind
    delhi

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  72. Hi,
    I went in for my annual eye exam last Wednesday and explained to my doctor that my contact lenses were often blurry and had begun to "shift" alot on my eye. She didn't seem to think this was a problem and just prescribed a different type of lens. After wearing the new ones for 4 days I noticed the same blurriness and shifting so I started to do some research. I came to the conclusion that I probably had GPC and went back to my eye doctor today. When I told her these lenses wee behaving the same way my old ones did and that I thought perhaps I had GPC she sort of pooh poohed me but agreed to check for it. Within seconds on turning up my eyelids she confirmed what I pretty much already knew-I had GPC. She sent me home with daily lenses and a prescription for Florometholone. I was wondering if you thought these drops would be okay or if you think I should ask to be put on Lotemax? I also wanted to let people know that while you should trust your doctors if you think you have something going on and feel like you are not being taken seriously it's up to you to assert yourself because ultimately you are your own best advocate.

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  73. Getting you in dailies is the most important part, so that's good. I don't personally like FML but its better than pred or dex, and certainly better than nothing. Plus its cheap. Its not a great substitute but again its better than nothing.

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  74. Thanks for responding so quickly. I am supposed to see her again this Friday to see how things are going. I will talk to her about the Lotemax then. Thanks again for all the info and for helping spread the word.

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  75. Is Crolom Patanol the same thing as Cromolyn?

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  76. Well, there is no such thing as "crolom patanol". So...no. those are 2 different drugs.

    Cromolyn sodium....brand name Crolom. Mast cell stabilizer. Very old drug

    Olopatadine....brand names Patanol and Pataday (depending on concentration). Combo mast cell stabilizer and antihistamine. Fairly new drug

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  77. I've been allergy tested twice within the last year(for the typical mold, dust, pollen etc) and don't wear contacts. I have GPC though. Have you ever run into this before? Does it need to be some allergy?

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  78. yes I have seen this many times. when it's not caused by contact lenses I personally don't call it "GPC"...I call it "vernal conjunctivitis" instead. it's an allergy problem and it needs Lotemax IMO. no antihistamine is gonna manage that. again, just MO.

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  79. I'm having issues identifying the allergen that is causing my conjunctivitis. I don't wear contacts, I have been tested for seasonal allergies (the common 60ish allergens...and cockroaches too so no need to worry about that) and nothing showed up, but I have conjunctivitis bumps on my eyelids.

    Do you have any advice for what I should try next? I researched the correlation between conjunctivitis and food allergies and found that there is no proof of a connection so there goes that thought. I'm miserable but out of ideas for the root cause. Any help/ideas would be appreciated!

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  80. It is not a food allergy. It is almost certainly an airborne allergen like pollen or mold.

    My experience s with allergists have been disappointing in the past. I have had them tell patients they were not allergic to pollen but WERE allergic to celery. well celery is not causing bumps on the back side of my patient's eyelids. Its pollen.

    Its almost certainly airborne. Are you using steroid eye drops?

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  81. (In response to "are you using steroid eye drops?") No. I am on Crolom and Alaway. I have read your posts and will bring up Lotemax though for the next time I am at the eye doctor. Here's my issue from the perspective of a non eye expert- I have heard a lot of people on Lotemax feel it dries out their eyes. Currently, I have a TBUT of 2 seconds in each eye. Do you still think it is a good idea to do Lotemax? Will it dry out my eyes even further?

    Thanks for the quick response.

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  82. Lotemax is used to TREAT dry eye. Google it! Haha

    Lotemax will certainly not cause dryness to be worse

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    1. Interesting! I will google it and look into it. Thanks!

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  83. Can GPC lead to dry eyes? If GPC makes the conjunctiva all bumpy and inflamed, that has to do something to the goblet cells because aren't they on the conjunctiva? And if GPC involves inflammation, then wouldn't that make it harder for tears to be secreted from the lacrimal gland?

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  84. No GPC does not cause dry eye and no GPC does not impede lacrimal gland production. However, GPC is inflammatory and the current thinking is that dry eye is probably also an inflammatory condition.

    Also GPC often gets misdiagnosed as "dry eye" and the symptoms of GPC are often confused with dry eye (both cause contact lens discomfort).

    But no I would not say that GPC causes clinical dry eye

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  85. Hi, thank you for your posts. I would like your opinion on my problem. I am 56 and have dealt with RA for 24 years. I have chronic dry eye and often deal with corneal ulcers. The ulcers are treated with antibiotics and a bandage lens. I have an rx for dailies that I use for ulcers. My eyes are so sensitive that I can feel an ulcer starting before it opens up and if I can get a lens on early then they heal more quickly. About four months ago I started getting lots of mucus in my eyes and my eye doc said it was GPC. The GPC causes me to develop ulcers so I have to wear the contact for prevention. Of course they come out at night, but the bumps rub my eye so badly that the first thing I do in the morning is get the contacts in. My doc put me on Pataday and Lotemax. I am discouraged because after four months they don't seem to be improving (wish I could do with out the contacts, but no way). She suggested I see an allergy specialist. I want to get well, but the truth is all my eye meds, contacts and eye scrubs are running me around $500 a month and I am on disability. I have medicare A & B, but no prescription coverage and Lotemax is $279 for 10 ml. I am also having foot problems and need to have custom inserts made and I am ready for a right knee replacement (had a left one and bilateral foot resection).

    I am sorry I do not mean to rattle on about all my ailments, but all these things are expensive and I have to make good decisions on a fixed income. Do you think it is beneficial for me to see an allergy specialist? Should I stay on my current regiment for a longer period of time and wait for better results? I know that GPC is not a life threatening condition, but I do know that when my eyes are continually hurting, it makes my whole body feel really bad. Any suggestions you have would be greatly appreciated. Thank You!

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  86. I'm sorry - it sounds as if you've had your fill of eye problems!

    Why can't you see w/o contacts? What about glasses?

    I am about to show my bias here but...in 13 years of doing this I have yet to have a great experience with an allergist. They are way more concerned (and rightfully so) with anaphylaxis, food allergies, and airborne respiratory stuff. They don't know much about eyes, care much about eyes, or know anything about contacts or GPC. If you're planning on going to the allergist to help solve your EYE problems and that's the only reason you're going...nah I'd skip it. What are they going to do? Announce you're allergic to pollen and eggs and tell you to avoid them and take benadryl probably. That's what usually happens at the allergist. I am not anti-allergist...I just think they're way more concerned with anaphylaxis...which is fine jut not very helpful in the case of GPC.

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    1. Thank you for your reply! I only wear contacts when I have an ulcer problem, because the pain is so bad and the contact is like instant relief. The swollen bumps from GPC rub until I have ulcers. When I blink it feels like thorns scratching unless I have a contact in. So as long as I have GPC, I will have to wear contacts. I don't need them to see and I don't wear glasses. I was not using contacts when I developed the GPC. However, I was using all kinds of drops and gels for the dry eye. Is it possible that preservatives in the drops and gels is causing me to have GPC? I have no other symptoms to indicate that I have allergies, but my eyes are sensitive ( sore, red, irritated) to everything (fragrances, candles, laundry detergents, smoke and the list goes on). I have been sensitive for several years, but no GPC, until my eye doc started adding different drops and gels. There's no improvement with the Lotemax, not sure what preservatives it has, but I do think I will skip the allergist and maybe go to some preservative free drops to see if that helps. Thank you for your input!

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  87. "Thank you for your reply! I only wear contacts when I have an ulcer problem, because the pain is so bad and the contact is like instant relief. The swollen bumps from GPC rub until I have ulcers. When I blink it feels like thorns scratching unless I have a contact in."

    ok this does not sound like an "ulcer" to me. this sounds like an erosion, which is completely different. the word "ULCER", when used in reference to a cornea, implies bacterial corneal infection, which is not what you are describing. you're describing probable recurrent corneal erosion.

    "Is it possible that preservatives in the drops and gels is causing me to have GPC?"

    POSSIBLE? yes. probable? no. probably allergies.

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  88. My eyes have been irritated for 2+ years. Might be allergies, might be dry eye, might be a combination of both.

    My eye doctor put me on Cromolyn and Alaway. After about 3 weeks, my eyes felt significantly better. Then the Cromolyn made my eyes itch really bad when I put them in my eye so I stopped. Consequently, my eyes went back to square one--really irritated and bloodshot. I went back to my dr. and he put me on Patanol instead. After 10 days of taking the Patanol, my eyes were significantly improved again.

    Does this sound like allergies or dryness? Does these drops even address dryness or are they only for allergies.

    Thanks!!!

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  89. Sounds like allergies, as all those drops listed above are anti-allergy. None of those address dryness

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  90. Is there a test out there that can test for specific ocular allergies? I am reading this one article online and they talk about conjunctival smears and conjunctival scrapings but I have never had an eye doctor suggest this to me.

    I really just want to know what is triggering my eye allergies because nothing has shown up in the tests at the allergist.

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  91. Allergy testing for ocular allergies is not usually indicated bc it doesn't change the treatment any. Still use antihistamines and steroids, unlike in systemic allergies where you could have allergy shots with the specific allergen in it to build up immunity.

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  92. Is IPL a safe treatment for ocular rosacea?

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  93. Why can't an eye doctor just do surgery to cut out the bumps and then cover it with an amniotic membrane like they do for other surgeries to help it heal? Is this an option?

    I'm in a really bad spot because I went three years fighting what a few different eye doctors told me was dry eyes and a have got minimal relief. Perhaps I am a bit pessimistic here but I have gone so long without treating the gpc at all and now I feel like it will be tough to control much less reverse at this point.So at this point, I would be willing to do anything...including having them cut these out if that is such a thing.

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  94. I was diagnosed with severe GPC about a month ago. Since then, an opthalmologist advised me to discontinue wearing contact lenses for 2 weeks. I was prescribed Pred 1% (4x a day) for 2 weeks. After the 2 weeks, he said that my GPC cleared up a bit and told me to continue taking Pred for 2 weeks (2x a day), then Lastacaft (1x a day) for 2 weeks. He told me it looks much better, but that I am still intolerant to contact lenses. Would I be able to wear dailies? Or at least try them out? He never even suggested this as an option but just told me to discontinue the Pred, and continue the Lastacaft. Now I always listen to directions given by a doctor, but I feel like he keeps scheduling more appointments and telling me the same thing to continue collecting payments from my insurance. Is it advisable to purchase dailies and try it out, or should I just follow his directions? I've been wearing my glasses for a little over a month and I can't take it anymore.

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  95. What do you advise for people with GPC but are also intolerant to Benzalkonium chloride?

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  96. Hi Doctor!

    I have been out of contacts since October 2012. My optometrist started me on Lotemax September 2013. I have been taking Lotemax consistently twice and three times a day since September. He checks my eye pressure every two months. I went in for my check up today, and he told me he wants me to drop to one drop a day for the next 6 months. I take a generic brand of Claritin once a day, and when needed, I use a generic brand of Zaditor like once a week.

    I haven't noticed significant improvement. I believe the numbers for GPA severity he gave me were: Right eye went from 2.5 to 1. Left eye went from 2.5 to 2ish.

    My right eye has never ever bothered me, so I don't know why they were the same level to begin with. My left eye is the problem.

    My question is: First, do you have any advice on anything additional I can try with my left eye? I don't care about getting back into contacts. I just want it to stop feeling like something is in it 24/7. Second, in your humble opinion, do you think one drop a day of Lotemax in the eye is enough to make a significant difference over the next 6 months?

    I really really appreciate all the information you provide on this blog. God bless you.

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  97. I've tried Cromolyn, Alaway, Zaditor, Bepreve, Lotemax all individually/at separate times. They have all been of slight help and relief, but none of them seem to take control. My eye dr now says she thinks Elestat will be a good option, because it is a mast cell stabilizer and a steroid all in one.

    Does this make Elestat better than the aforementioned eye drops? I know your first choice is Lotemax, but if Lotemax doesn't work on people, would Elestat be your second choice?

    I appreciate your time and your blog posts. Thank you very much.

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    Replies
    1. elestat is not a choice of mine at all. nothing special about elestat.

      Delete
  98. I just came across your blog and I'm hoping you're still here! :) I'm struggling with both GPC and Meibomian Gland Dysfunction. I haven't worn contacts in over 10 years since I had LASIK. My eyes were always a bit dry and uncomfortable but in the past few years its become significantly worse. The burning and foreign substance sensation is beyond annoying. I've tried restasis, I have punctual plugs, drowning my eyes in drops all day long... I had Lipiflow done 3 months ago for the Meibomian Gland Dysfunction, and have been on Lotemax since then as well. I haven't noticed much of a difference yet. I also take 3000 mg of fish oil and Hydro Eye supplements daily. Is there anything else you can suggest? The right eye is way worse than the left. I'm desperate!

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  99. If I sleep with contacts for around 30 minutes in the morning, does this cause GPC?

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  100. You say in one of your posts you put your patients on Lotemax 4x/day. How long do you do this before you decide the GPC is permanent?

    Thanks for your thoughts!

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  101. 6 mo or so. If they have no improvement after we've been through their allergy "season" I assume it's chronic.

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  102. Hi, I was wondering if you could help me. I went to the opticians a couple of days ago as I was having problems with the contact lense in my right eye (left eye was perfect, as far as I could tell), the lense felt irritating and dry, and was making my vision blurred, no redness or pain, or any other symtoms.

    I saw a newly qualified optician who flipped my lids and told me that I had bumps under my eyes and he would guess that I was experiencing an allergy to something. He suggested that I don't wear my lenses for a while and use opticrom, and then return in a couple of weeks for another check up. I was fairly satisfied with this diagnosis and relieved that it was nothing too sinister, however he told me as he was newly qualified he would have to get his supervisor to sign off his diagnosis. His supervisor came in, took one look under both eyelids, without hearing any of my other symptoms and simply said that the right eye was grade 3/3 and the left grade 2/3, then he went to leave and simply said to me 'this will take you a very long time to recover from and you probably won't be able to wear lenses again'. So as you can imagine I was left a little confused by the fact that one minute I was under the impression everything would be fine and the next, with no actual explanation, was told that I would never wear the lenses again. This was a couple of days ago and obviously i have ceased wearing my lenses, and will do until I go for another check up in a couple of weeks at the very least, but i'm a little confused. From googling, 'bumps under the eyelids' and from what the supervisor doctor said i'm assuming that he was implying I have GPC, and pretty badly if he said they were grade 3/3 and 2/3, even though I really did have no notable symptoms to my knowledge in the left eye and only the contact lense discomfort in the other.

    What would you suggest i do from hear? Should i go back for a second opinion? I had been told i had bumps under my eyelids a couple of years ago and told that it was probably due to a pollen allergy. How do you differentiate between a general allergy that causes some bumps under the lids and the 'giant' bumps described in GPC?

    Any information or thoughts would be greatly appreciated.

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  103. have you read my other GPC posts? a lot of these questions are answered there, and many comments are from patients with very similar problems:

    http://myeyepod.blogspot.com/2009/06/gpc.html

    http://myeyepod.blogspot.com/2012/08/gpc-dailies-silicone-and-dry-eye.html

    technically the differentiation of GPC vs "follicles" (smaller bumps) from "pollen allergy" would be made on size. however, what is considered "big"? it's up for debate. some people don't call them "giant papules" until/unless they are MASSIVE. in reality, tho...if a person is a contact lens wearer and they have bumps, its usually assumed those bumps are "GPC" regardless of whether they are massive or not, and that's a pretty good assumption.

    if you read the other posts you'll see how I feel about this: IMO most GPC cases need dailies and Lotemax. a "second opinion" probably won't tell you much. you've already had 2 people confirm you're a contact lens wearer with bumps. what's a 3rd going to say? dailies and lotemax. don't mess around with "crolom" (40 year old therapy) or anything OTC, or prednisone or FML or dexamathasone or any cheaper, generic "alternative" b/c none of them work very well for this.

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  104. ok, thank you for your quick response. Do you know if Lotemax is available in the UK, or if it is known under a different name?

    Thanks for your help :)

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  105. I'm sorry, I do not know. the drug name is loteprednol, however. good luck!

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  106. Hi Doc,
    Let me just start out by saying that this blog is very informative. Thanks for taking the time to answer our questions.
    I've tried to get rid of GPC for a while now. When I first started wearing lenses, the eye doctor gave me Frequency 55 monthly lenses (dinosaur lenses, I know). Those were fine for my eyes in terms of fitting, but there was a lot of redness. Now, 4 years later, I am on Acuvue OneDay Moist. Of all the lenses I have tried, these are probably the best, as I can get about 4-5 hours of comfort with no redness (8-10 hours if I am outside all day). I do not know how severe my case is, but the only symptom of GPC I have is redness. I have seen a lot of people talk about mucus discharge-- that has never happened to me.
    But, after seeing your reviews on DT1 I decided to try those out. Not sure if it was because I tried them during allergy season or if it is because these lenses do not suit me, but my eyes got redder faster. Is it possible that my eyes are just not tolerant to DT1? Or do you recommend that I try DT1 again while taking Lotemax? And if DT1 is not for me, what is your second choice lens for GPC sufferers?
    Sorry to bombard you with questions, but I can never think of these things while in the doctor's office. Thanks so much for your time and feedback.

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  107. Yes it's possible that your eyes are "not tolerant" to dt1. So that's easy... Don't wear a lens that exacerbates your symptoms! My personal 2nd choice is dailies aqua comfort plus

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    1. Thanks for the reply, I will definitely look into the Dailies AquaComfort Plus next time I go for an appointment. One more question that just popped into my mind.. When I wake up in the mornings I feel like my eyes are dry. I cannot tell if this is the result of GPC or if this is simply 'dry eye'. Is there a way to tell whether I have naturally dry eyes or if this is just a result of the GPC inflammation? And if it is dry eye, what would you recommend as a solution? Thanks again for your time/responses.

      Delete
    2. no easy way to tell. for dryness the Lotemax works well, Systane Ultra is an OTC drop that is popular and works ok, and there's always Rx Restasis...although if you're already on Lotemax that probably won't help you much

      Delete
  108. I have been wearing contact lenses for a little over a year now and have recently been diagnosed with GPC. I started getting the symptoms at the start of this year, with dryness, discharge and itchiness but simply dismissed it as side effects to wearing lenses. Only recently, the symptoms have gotten so bad to the point of my feeling as if something is stuck in my eye all the time. The lenses I have been wearing is Air Optix paired with Alcon Opti-free Replenish solution. I was not informed by any of my opticians that a protein remover is needed when wearing silicone hydrogel lenses. My optician recommended I try Opticrom to treat this problem.
    Below are my questions:
    1) How long should I wait before going back to wearing contact lenses?
    2) I just bought a 6 month supply of Biofinity lenses. Would it be more comfortable for me to wear these after two weeks of treatment or is this almost the same as Air Optix?
    3) After doing some research, I found that people who use Opti-free Replenish have had higher cases of GPC. Is it possible that this is the cause behind my GPC?
    4) Is there a better/more effective alternative to treat my GPC?

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    1. well professionals disagree! I crolom is 1960's pharm technology. nobody does that anymore. I'm sorry if that sounds blunt, but it's true. EVERYONE else is using steroids or combo antihistamine/mast cell stabilizers like Pataday, Lastacaft and even $10 over-the-counter Alaway. nobody uses a stand-alone mast cell stabilizer like opticrom anymore at all for pretty much anything. also, in the case of a known GPC sufferer with comfort complaints, I always recommend to my patients to stop messing around with monthlies like Air Aqua and Biofinity, along with "protein removers" etc etc. I just give up and switch the patient to dailies. no combo of opticrom, protein remover and biofinity, etc etc is likely to reduce their symptoms. if you've read the blog I preach it from the hilltops over and over and over: DAILIES AND LOTEMAX.

      1) I'd switch to dailies and try it immediately
      2) probably not more comfortable in any monthly. biofinity almost the same as air optix
      3) no, opti-free is not the cause. this is, at it's core, an ALLERGY problem. can't blame it on the solution or the lens. unfortunately, it's your eyes.
      4) yes! DAILIES AND LOTEMAX.
      good luck!

      Delete
  109. Hey so in June 2015 I was diagnosed with GPC after trying a new brand of contacts and using a cheap lens solution that caused my eyes to burn. The burning continued and the doctor gave me lotemax to use however this made my eyes worse and I couldn't even open them because I guess I was allergic to something in it. I then went to a different Doctor after my insurance changed who put me on Pataday and rated my GPC a 3/5. Well the Pataday irritated my eyes as well of course as it contained BAK. So I went to using lotemax ointment for 3 weeks in October but I hated it. The ointment stuck to eye once it dried up and my eyes felt worse but however it did bring my GPC from a 3 to a 1 in my left eye and 2 in my right. So now I'm stuck. My doctor tried telling me I was having chronic dry eye and that my GPC was pretty much gone yet he just told me it was still there and was too afraid to put me on drop after because my allergy to BAK. So I stopped going to him and went to a corneal specialist who gave me dry eye tests and my eyes showed no dry spots and I was producing the normal range of tears and my tear film looked good. She says the bumps under my eyes are common and a little more prominent and that it's hard for her to really tell what's causing my constant burning and redness and inflammation in my eyes. So she thinks it's some form of dry eye. Yet I have the same symptoms I've had since my eyes were horrible in June and when I flip my eyelids I see fine papillae with almost a sandpaper texture on them.

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  110. ok. I'm sorry but this is a common story. I feel bad for you but there's not much more advice I can offer. if you go back to contacts later, try dailies if you haven't yet.

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  111. I was diagnosed with GPC by my optometrist 8 weeks ago, a few days after first noticing symptoms - uncomfortable/sore eyelids, swollen eyelids but no redness/itching. I was prescribed Patanol to use twice a day and told no contact wear. This didn't really help much but I kept going for 6 weeks.

    Finally saw an ophthalmologist around a week ago. He didn't seem to think it looked too bad - not much worse than would be expected for someone who has worn contacts for 15 years (well it sure as hell feels bad!). He prescribed Maxidex to be used twice a day for the first week then down to once a day for the next 3 weeks.

    The first week is up and I still feel no better, and only very slightly better than I did 8 weeks ago. The thought of reducing the dosage is depressing as its not helping so far anyway. I've been out of contacts for 8 weeks now so pretty miserable.

    Am I being too optimistic in thinking that I should at least feel some improvement after a week of Maxidex?

    Do you think I should find someone to prescribe me Lotemax or is Maxidex also good at treating GPC?

    Thanks for the great blog

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  112. maxidex is not bad for treating GPC. it will work and it's cheap BUT...it's relatively risky. can't be on it very long b/c it is known to cause both cataracts & glaucoma. don't get me wrong...3 mo of maxidex is perfectly safe. but years of maxidex...not so much. lotemax does work a little better and is much much safer. you can be on it years and years and years and never develop cataracts or glaucoma. problem of course is: it's a lot more expensive than maxidex. like a LOT more. if you've been out of contacts for 8 weeks and on steroids and you're still "miserable", that's not a good sign. I doubt changing over to lotemax will solve your problem. it's better but it's not *THAT* much better.

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  113. Thanks so much for the quick reply. Just to clarify, I've only been on Maxidex twice a day for 1 week. Before that was Patanol for 6 weeks. Does Maxidex take longer than a week to start working?

    Thanks

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  114. oh ok yes I misread or misunderstood. yes 1 week on any steroid is not very long. you have hope (but no guarantee!) of significant improvement over the coming weeks on maxidex. good luck!

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  115. Thanks a lot for your previous replies. I have noticed a change in the last few days. The swelling seems to be lessened but my eyes are really itchy the past few days. I'm not sure if its just more noticeable now the other symptoms (stinging, swelling) are a bit better or if it could be caused by the Maxidex that I'm currently using once a day.

    I don't remember my eyes itching this much before the past week or so. Any thoughts?

    Thanks

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  116. the itching is probably not from the maxidex. maxidex generally solves itching, it doesn't cause it. it's probably your gpc/allergies. ocular itch is the #1 symptom in allergic conjunctivitis

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  117. 5 months break, 2 weak maxidrol, 1 month Patanol, DT 1 doesn't work, any ideas?

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  118. not really, the people who are on steroids and use dailies and are still not comfortable...those are usually the ones who we tell "you are no longer a good candidate for contact lenses"

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  119. Thank you for this information. GPC made contact wear intolerable (alcon air optix) . 2 mths of Alaway/glasses; no effect. I cobbled together my own treatment of Lotemax and Alomide; a mast cell stabilizer. 4x Lotemax/week and then 2x for about week and half. Alomide 4x entire time. Alomide maybe a waste? dunno. GPC completely cleared up. In Dailies AquaComfort Plus now just on weekends. Going back in 3 mths to see if any imflamation and may increase contact use if all is good.

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  120. I stumbled upon your site after some intense google searching. After 15 years in contacts, I found out today that I have stage 2 GPC. I am so scared I'll have to wear glasses for the rest of my life. The Dr gave me daily contacts (alcon aqua comfort plus) and Prednisolone steroid (4 drops for a week, then 3 drops a week, then 2 drops a week, then 1 drop a week.

    I read the steroid will cause my corneas to become thin. Will thin corneas disqualify me from a possible LASIK surgery 2 years from now? Will the corneas regain thickness after I stop taking the steroids?

    How likely is it that I develop cataracts/glaucoma from this treatment? I've been reading about these potential side-effects all night and I've freaked myself out.

    Thank you for your insight! :D

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    Replies
    1. "I read the steroid will cause my corneas to become thin." NO that's only after PROLONGED use. years and years and years. not 4 weeks like you're stating above.

      "How likely is it that I develop cataracts/glaucoma from this treatment?" again this is only after YEARS AND YEARS of steroid use. no one develops glaucoma or cataracts from 4 drops a day for a week, then 3 then 2 etc etc. nobody. cataracts, glaucoma and corneal thinning are seen in patients who use steroids every day for 15 years kind of thing

      Delete
  121. Hi,
    Long story as short as I can tell it. Three months ago after wearing contacts for 30 years without issues... hard, gas perm, and softs, I suddenly work with a swollen eye, loads of mucus, redness, no itching. Went to the doctor he said dry eye. Showed me it on the staining. Told me to lubricate my eyes constantly. I did. Nothing got better. Then it was an antibiotic drop, followed by a combo of antibiotic and steroid. Never another diagnosis. Went to second doctor who prescribed Lotimex. I was on it for a couple of weeks and he told me to stop everything. That my eyes may get worse for awhile but to stop all of it. I haven't because the moment i stop a day later my eyes are awful. They have never given me a diagnosis. Neither of the doctors I saw. I have diagnosed myself and wonder if I should just treat myself with the Lotemex and Zaditor . If so how often and how much and for how long thank you so much Lyndy

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  122. Long story short... been to two different doctors after waking up with swollen eyes and mucus . The first doctor said it was dry eye after doing a stain and picture. Told me to lubricate. No better so he tried an antibiotic. Better but came right back after. Then steroid and antibiotic together. Better but when I stopped came back. Doctor two. Never gave me a diagnosis but put me on Lotemex for a couple of weeks. It worked pretty well, but also used the antibiotic drop with steroid when it would start up again. Then he added Zaditor. Last visit he told me to go off everything. He said my eyes will get really bad but will improve after some time. I didnt follow his directions. Please help me . I've worn hard contacts Gas Perm and soft contacts over 30 years. I have never had this happen. No one has told me I have GPC. I basically have diagnosed myself. Now I need help managing it. Please Help Thank you so much Lyndy

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  123. dry eye does not cause "swollen" eyes so that would not have been my 1st thought. I am thinking allergies or GPC like you are. that adds up with the story, anyway. so step 1 is stop wearing contacts if you haven't already. are they soft right now or gas perm? I' stop wearing contacts, keep using lotemax until you recover some. then switch to dailies. don't get too hung up on "never having this problem before".

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  124. Hi, I've been having problems with my eyes since March now. To summarise as briefly as possible.

    Was diagnosed with GPC end of March. Lotemax and Patanol twice a day for 2 months then once a day since.

    I've been out of contacts since March.

    Originally I was miserable. Very swollen eyelids, lots of itching, foreign body sensation, aversion to light etc etc.

    Fast forward to now and the eyelid swelling is much better, no foreign body sensation or aversion to light. However my eyes still don't feel right. I feel OKish in the morning but gradually they feel worse throughout the day and get puffy and itchy by the evening. I'd say its maybe 50% better than it was 5 months ago. The only thing that gives me any instant relief is cold water on my eyes or slightly better - cold milk. This lasts from a few minutes to an hour or so.

    Ophthalmologist and Optometrist are both happy for me to gradually introduce daily contact lenses now and say they only see minor irritation now but I don't feel ready (as much as I'd like to!) I do seem to be getting some improvement but its not noticeable on a week by week basis, maybe only a tiny improvement each month.

    My main question to you is have you come across it before where even though the patient is doing all the right things (no CL wear/steroids) it takes 6-12 months to clear up? Is this normal (if unusual)? It feels painfully slow. I seem to read a lot of people are much better within a month or two. Thanks in advance.

    ReplyDelete
    Replies
    1. "have you come across it before where even though the patient is doing all the right things (no CL wear/steroids) it takes 6-12 months to clear up?"

      YES

      and I have even had a few patients who *never* got over it. some immune responses are just too hearty.

      Delete
    2. Damn, really hoping this does go away completely. It's not nice.

      Funny how nobody ever tells you this can happen when you start contact lens wear. I would've considered LASIK much more seriously years ago if I knew CL wear could give you conjunctivitis permanently.

      Thanks for your response

      Delete
  125. Can I have your opinion? I went yesterday for my lasik consultation. She was checking to make sure my vision is the same as I claim it is. Long story short I was having a hard time seeing and focusing my eyes. After examining my eyelids she determined that I have a severe case of GPC. She said she didn't want to do lasik now until this was resolved. She has put me on steroids (prednisolone) one drop in each eye every two hours! I'm supposed to go back in a week (2/14). Based on what they are saying they think I'll still be good for lasik on 2/24. What are you thoughts? Is that long enough for the GPC to go away?

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    Replies
    1. well, it's possible! depends on the severity of the GPC and your body's response to the steroid. also whether or not you're still wearing contacts

      Delete
  126. Just spent an hour reading all of these posts. A month ago I got dx with GPC. No contacts and Alrex steroid drops for 2 weeks. Then it was still present. No contacts, continue drops and 5 samples of dailies to try. I finally got the clear after a month to try my air optix again. Gpc much better but still present. The next day i wore my regular contacts. By the end of the day they were itching. And after removing, my eyes are very gritty... even after a nights sleep.
    Are my eyes not ready for my contacts yet?
    Did one day of wearing contacts make it worse again?
    Should I ask to use dailies and try to go back to air optix a few months from now?
    Or am I most likely done with wearing my monthly contacts?
    I am a 43 year old female. I have worn contacts for 17 years. My eye Dr said my gpc was worse than their poster in the office. But they have responded to the steroid drops.
    Thanks!

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    Replies
    1. YES go to dailies. I never understood why docs go back to the same lens after a diagnosis of GPC. it is unlikely IMO that you will ever be able to comfortably wear Air Optix again. gotta try dailies. good luck!

      Delete
    2. Thank you. I was very skeptical to try again. It did get some better for a week but now my left eye is red, scratchy and itchy. I pray dailies will solve the problem... another phone call and probably a 50.00 copay to my eye Dr.

      Delete
    3. .... One more question to the above: any idea why my eyes would only be very bothersome for 2 weeks when I put a new pair of air optix in, then they are absolutely fine until I would put a new pair in? My eye Dr. Said that was probably just a coincidence. ?? Thanks!

      Delete
  127. I was diagnosed with gPc about 7 years ago. For 2-3 years I worked very closely with my ophthalmologist to get my GPC in check with an antihistamine drop and a steroid drop. Each time I returned to my contacts it would flare up. I finally resolved myself to the fact that I may be someone who just needs to stick with glasses. Still, several years later, the GPC flares up like clockwork in early spring and late summer/early fall. I am currently using bepreve and alrex (added that 2nd drop last week), no lenses and am about to burst into tears because my eyes itch so fiercely. Any suggestions on what to switch up. This is the worst flare up since my original diagnosis. And is it normal to suffer from symptoms of GPC after discontinuing lenses years ago?

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  128. Lotemax is what I usually use in these cases. And yes it's not unheard of to "still" suffer from the GPC despite lens discontinuation

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