Recurrent Bilateral Uveitis

[linzeroo]

My Story:
I'm a 23 year old female with bilateral anterior uveitis, HLA-b27 negative, negative chest x-ray for sarcoidosis, negative for herpes and toxo, negative wrist x-ray for arthritis, negative lyme (except for one positive titer), normal ANCA, father has ulcerative colitis and paternal mother had psoriasis. I went to a rheumatologist who found nothing (who did basically every blood test possibly) as well as 5 opthamologists including one specialist, Dr. Samson. I have raynauds phenomenon, acid reflux/ dyspepsia, but besides that am healthy.

My first episode with uveitis was around 6/7 years ago. My right eye was blurry, no pain or light sensitivity. Was found to have anterior uveitis in my right eye only which quickly resolved with prednisolone drops. At the time i thought that i might have hit myself in the eye and caused it since it seemed to be an isolated incident. I didn't have my next flare until last year in April 2014, which was a 3+. It resolved after prednisolone drops as well after a couple weeks.
Then a couple months later in june 2014 i had another flare which resolved a couple weeks later, treated with prednisolone once again.

Then in November 2014 I had another flare that included eye pain, and headaches from my right temple, down to my ear and was told it was 3+ once again. I was started on prednisolone i believe every 2 hours for a week and then went back for a follow up. At the follow up my doctor said it had improved so i was slowly to taper down over the next week. The following week at my next followup appt, the inflammation went back up to a 3+ so i went back to using prednisolone every 2 hours. The next week the inflammation had not changed, and there was a flare in my left eye as well (which had never happened before), so i was switched to durezol every 2 hours which i was doing for at least a week. Over the next couple weeks i was tapered down until my appt with the specialist in NYC. When i met with the specialist in early January 2015, my right eye only had one old cell in it and my left was trace but my IOP in my right eye was 32 which is a large increase from my normal 14. I was told to discontinue the durezol in my right eye since there was no flare and to start taking brand pred forte once daily in my left eye, that still had trace. Two weeks passed, and i had to go back to college in a different state so i met with my doctor there to check my eyes. Turns out after two weeks of being off durezol in my right eye, it flared to a 3+ again so i was back on the durezol every 2 hours in my right eye. Its going on 3 weeks of taking durezol every 2 hours because my right eye is at a 2+ now and has not really improved that much. I'm extremely concerned about my iop raising again. Now, the pain in my right ear to my temple is back and advil does not help.

Does anyone else have any insight on what the pain in my ear/ temple may be? Its a dull ache, similar to how an ear infection feels. I know that it is common to have headaches with uveitis but the placement seems odd. I'm also contemplating asking to be tested for H. pylori just to see if that could be a potential cause (i have dyspepsia/ GERD but have never had an ulcer).

A few days before my worst flare in this past November, i switched birth control pills which i think may have had something to do with causing the flare. I am thinking about discontinuing them to see if my flare resolves but an worried that the hormonal changes could worsen it even more.

My doctors have been discussing the possibility of using MTX or cellcept, but there is a lot of cancer in my family and i'm not sure if it will even 'cure' my uveitis since i'm hla-b27 negative. Has anyone successfully used an NSAID like celebrex to prevent flares?

Thanks!!

[Mike Bartolatz]

With your medical family history, it is most probable that you have the IL23R gene which causes GI tract disease, psoriasis which can turn to psoriatic arthritis in about 15 years or so. sarcoidosis is linked to this gene as well as autoimmune thyroid disease - graves disease and hashimoto's thyroiditis also linked to type II diabetes, Systemic Lupus erythematosus. Early intervention with a DMARD drug makes it actually less likely to cause cancers from one study I read awhile back. it is when you allow inflammation to constantly smolder that it kicks off cancer. Uveitis in these conditions is also linked this gene. the GI tract problems are esophageal motility problems, mouth sores, stomach and intestinal problems linked to Crohn's disease and ulcerative colitis. some individuals also develop celiac disease. the NOD2 gene also plays a role in Crohn's and ulcerative colitis as well as Sarcoidosis and uveitis. one study done by Dr Rosenbaum showed a pretty large number of individuals with anterior uveitis had the NOD2 gene present.. he also found an association between IL23R and the sarcoidosis which caused IL17RS to be produced in retina tissues in posterior uveitis in sarcoidosis patients but the same SNP of the IL17 and IL23R genes are present in all of the things mentioned.

if you have eczema on your skin, scalp etc, this is linked to psoriasis through the same SNP's and the IL23R/TH17 pathway of inflammation which can also trigger the TH1 and TH2 responses leading to il17 activation.

H pylori is a trigger for GI, heart and vascular system disease and is also found in the anterior chamber and cilary body which can cause glaucoma to occur through research by Dr Rosenbaum et al. at Casey Eye institute in Portland, ORE. USA. other doctors there are Eric Suhler and DR Smith who does research for DR Rosenbaum on Genetics and uveitis. use these names at PUB med for articles on these topics to show your current Doctors.

if you develop moderate to severe plaque psoriasis, or get tested for the IL23R gene you could then use the Drug Stelara ( usetekinumab0 which blocks the inflammatory cascade caused by the triggered IL23R gene. once activated by a pathogen the immune system goes into overdrive to eradicate the pathogen but then it is out of sink and continues to cause inflammation inside they eyes. other drugs are Remicade and Humira to block TNF A but if you start Stelara early it can make the TNF A and TNF17 to not be produced. it is the TNF A that does most of the damage in inflammatory disease and autoimmune disease processes but just blocking the TNF A may not prevent the future production of it if the IL23R gene is still activated.

hope this makes sense,
you might try going back to DR Samson OR DR CHU in NYC for a consultation or go to Boston/Cambridge to see DR Foster at Harvard/Mersi http://www.uveitis.org patient information section of the site on the specialist list for contact information.

you have to break this steroid rollercoaster and Durezol is NOT the answer. it was designed to be used only for 2 Weeks because it causes glaucoma. that is why Dr Samson switched to Pred Forte which can cause elevated pressure but not as bad. the Methotrexate would be added as you still use the steroid eye drops, then you are slowly weaned off the steroid as you ramp up the MTX dose. this takes about six months. then once off all steroids without inflammation you stay on the MTX for TWO YEARS before tapering off the MTX.

get tested for the NOD2 gene and the IL23R genes because of you family history of GI problems and Psoriasis. it can take a couple of decades for symptoms of the underlying condition to pop up showing ANA etc as positive and while on steroids or other meds your ANA Would be Negative or within Normal limits, then stop the steroids and a few months the process starts up again.

wishing you quiet eyes,
Mike Bartolatz

[linzeroo]

Thanks for the reply!

I do get ulcers sometimes on my gums and red patches on my scalp that my derm. said was seb. dermatitis. So it's possible I may have that gene. I'm also going to ask Dr. Samson about getting tested for H. Pylori to rule that out as well.

I just had a follow up today with my dr. at school who is not a specialist, and the inflammation is now trace which is a good improvement from the 2 it was last Friday. My eye pressure has increased from 14 to 18 so I'm sure it will become even more higher as I taper off the Durezol. This will be the fourth week on Durezol which I am not thrilled about due to the high risk of elevated iOp. I've been told to taper down this week to every four hours, and then the next week if there is no worsening to go down even more. I want to get off Durezol asap. I have an appt with dr. Samson March 2nd so I'm hoping I do not flare again and that my pressures are not insane.

I've noticed that my pupil in the right eye that is mainly affected is larger than my other one, but I have never used dilating drops ( besides in the Drs office which has not been for over a month). Could th Durezol be causing the large pupil? I've read scarring from iritis can cause the iris to stick, making it large. Is this permanent or dangerous?

Thanks!!

[Mike Bartolatz]

the Durezol shouldn't cause the iris o be larger. are you still on dilating drops? if not you might call Dr Samson and see if he wants you to use them to break any adhesion before it becomes permanent. with increasing pressure he might also want you to use pred forte instead of Durezol with inflammation going down, it can also increase pressure but not as quickly if I recall correctly.

usually IOP is considered high at above about 22 or so. below that you shouldn't be at risk. it is when it gets about 30 they start getting worried. but some doctors start using pressure lowering drops at about 25 if you are to remain on steroids. they usually have you come in every two to three weeks for a recheck of pressure too when you get above 22 or so.

wish you a happy Valentines Day!
mike

[linzeroo]

I just called the doctor I met with this morning to tell him about the larger pupil. He said that when he looked there was no adhesion, that my pupil was responsive to light, and that it's common for the pupil to be larger in uveitis, but he didn't want to give me a dilating drop. So hopefully it's okay. It's not abnormally shaped, just slightly larger. Ive never used dilating drops before and haven't had my eyes dilated at the doctors office in over a month.

I'm thinking of adding in pred forte as I'm tapering down sometime next week to reduce the amount of Durezol im using. Fingers crossed I don't flare again like the last two times.

Happy Valentine's Day!!

[Mike Bartolatz]

only use medications prescribed and monitored by your ophthalmologist.

take care,
Mike