Episcleritis/Scleritis

[BlueEyes19]

Hi Mike,

Hopefully I am posting in the right place here...what a great site you have - just recently discovered it and enjoy reading other's experiences with similar conditions. Here is my story - am hoping to get some input from some people other than my doctors...I am a 27 year old female and have had recurrent episcleritis for the past 7+ years, increasing in frequency to once a week for the past year. I am currently under the care of a uveitis specialist trained by Dr. Foster (for the past 1 1/2 years). Have been on Indomethacin, Celebrex, and now Diflunisal (Dolobid), which does help control the degree of redness/inflammation but none have stopped it from recurring. My episcleritis was more severe in the past, but I have gone through every alternative imaginable to avoid stronger drugs (naturopath, food sensitivity testing, off birth control pills, adrenal tests, you name it) which has reduced the severity significantly but has not put me into remission. Now, when I get my weekly flare ups, a drop or two of PredForte a day can usually clear the redness up for the day (repeat for the next 2-3 days when it wears off). It always bounces between eyes evenly - left eye one week, right the next, left the following - like clockwork. Never repeats in the same eye twice in a row. I have had all the rounds of bloodwork - nothing noteworthy except positive for herpes (but my eye doctor does not think my episcleritis is infectious) and elevated lupus levels years ago. No HLA B27 gene, negative ANA...I was on Methotrexate for a few months last year - it did clear up my flares (eyes were great) but I took myself off because of constant overwhelming fatigue and those scary side effects. Now my doctor believes I should go onto Humira (has been discussing this for awhile but I have a very hard time accepting it). I have an appointment for a second opinion with Dr. Samson in NYC (I know you have mentioned him here before) - I am thinking he will recommend the same, maybe the more doctors that say it the more I will believe that I have no other options. I know immunosuppressants like Methotrexate and TNF blockers like Humira are used for scleritis - my doctors have only ever diagnosed me with episcleritis (and once possible borderline scleritis). I don't think my eyes are nearly as severe as true scleritis, so it is very hard for me to accept going on such a "Strong" medicine. I do understand the damage associated with long term use of steroid drops, and know I need to get this into remission, but am I missing something here? Or is the next step really and appropriately Humira? I know oral prednisone is used also - my doctor says Humira is the better option (lesser of 2 evils maybe?). I have never really had a problem clearing my eyes up - they clear up relatively quickly with drops - but getting them to stop recurrently flaring is the problem! Sorry for the long novel, just hoping to get some input from an educated source other than my doctors. Thanks so much!

[BlueEyes19]

CORRECTION: Elevated LYMES level, not lupus! Oops!!

[Mike Bartolatz]

only Dr Samson can really answer this. Scleritis is a very red eye with PAIN, episcleritis is a red eye without pain usually responds to NSAIDS. I have had a red eye for over 40 years now from severe dry eyes. it has discomfort but it gets better with lubricating eyedrops.
if all you have is a red eye without pain, I wouldn't go for TNF a blocking drugs. I might try Restasis however which is a cyclosporine based topical eye drop. I would also go back to Methotrexate before trying Humira or Remicade. the TNF A drugs have the risk of setting off lupus if I recall correctly and you had some test to indicate low possible lupus. often this is an antibody test called the ANTI RO (SSA) and ANTI LA (SSB) tests. subcomponents of the ANA Testing you mentioned.

the main thing is to make sure that this isn't linked to any virus, bacteria etc. as these drugs down regulate the immune system and if a virus or bacteria is present, then they can go crazy and it could then cause inflammation of the Cornea or get into the eye causing uveitis.

please let me know what Dr Samson suggests,

my best to you,
Mike

[BlueEyes19]

Thanks for that quick reply Mike, I appreciate it and will let you know what Dr Samson says when I see him on March 4th. Take care!

[Mike Bartolatz]

you do so as well,
Mike

[BlueEyes19]

Hi Mike,

Hope you are well. Just wanted to follow up like I had promised - met with Dr. Samson yesterday - he is great! Very caring and allowed me to take my time asking a million questions He disagreed with my other uveitis specialist's opinion, and like you said - did not support going on an immunomodulator for all he sees is episcerlitis, even though it flares as often as 3 days per week. He suggested only using Naprosyn during flares (I was previously on Dolobid every day). So I am a bit confused now that I got two totally opposite responses! (both doctors trained by Dr. Foster) Dr. Samson didn't really seem concerned at all, but my other eye doctor is to the point where he strongly supports me going on the immunomodulator (the one who sees my eyes all the time).

Thanks again for providing this great online tool!

[Mike Bartolatz]

Don't know what to say! I hope that by taking Naprosyn that it will calm the episcleritis if that is what is going on. only your experts can guide you at this point. each of us is different in how we respond to various NSAIDS AND OTHER DRUGS. Although you took dolobid in the past, it might be that switching to Naprosyn will do the trick for you. the eyedrop Xibrom topical nsaid might help too but I don't know for certain.

could some of your problem be from ocular allergy and severe dry eyes? you might try an OTC lubricating eye drop such as Refresh etc to see if it helps. it comes in 'single use vials' without any preservative in it. you open the vial, instill it and then you throw it away. just a thought.

wishing you some relief!
mike

[BlueEyes19]

Thanks Mike! Wrote to Dr Foster - he says Time to move to an immunomodulator. Thanks again!

[Mike Bartolatz]

Thanks for the input from Dr Foster. I thought that might be the case since you responded to MTX in the past.

take care,
Mike