Looking for advice - recurring iritis

Post here to exchange iritis general information and support with others.

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evankmd82
Posts: 4
Joined: Mon Feb 16, 2015 10:22 am

Looking for advice - recurring iritis

Post by evankmd82 »

Hello,
I am not sure if the correct term would be chronic iritis or recurring iritis so maybe you can help me with that. I am also looking for general advice as to my next step. Here we go:

Starting around Sept 2014, I noticed that my right eye felt "black and blue" if I touched it through the eyelid, and that looking at up-close objects caused pain. It then began to water and became very irritated. After a couple weeks of it not going away, I went to a walk-in clinic and eventually an optometrist. They diagnosed me with iritis and began 1% prednisone eyedrops every 4 waking hours. I also got dialating drops which I used for a week or so. The pain was still there but not as much once the dialating drops were stopped and then it went away and left me with very blurry vision as I weened off of the prednisone eyedrops, decreasing the dosage week after week. The blurred vision scared me so I went to an ophthalmologist as well. He said he could see signs of previous iritis bouts in both of my eyes but that the blurred vision was normal and should go away. As I continued to ween, the blurred vision (which I found happened mostly after looking at bright lights) dissipated and so did an army of "floaters" that had lasted for a few weeks as well (I described it as looking like a distant flock of birds was flying by when I moved my eyeball when I was outside in sunlight for example). My vision was about normal again after about 3 months.

Only a week or so of being done with my right eye, I noticed that familiar pain with my left eye! Oh no!! I started with the eyedrops again, started using the dilating drops when the pain was bad, and again this bout with iritis lasted about 3 months - my vision was still blurred as I weened off of the eye drops completely.

Only DAYS after I stopped taking them, I felt the pain beginning in my right eye AGAIN. Then, a day or two later (while my vision was still blurred from the last attack), the left eye TOO started hurting again. This was a very bad sign I am sure. Based on advice I have read (until I get a call back from my ophthalmologist), I am now putting the steroid eye drops in both eyes every 2.5 waking hours. It seems to have quelled the pain in my right eye, and my left eye also has improved but still has a little bit of pain.

Other relevant info: After my first bought, due to other auto-immune type symptoms (alopecia, vitiligo - all ramping up in recent months and years as well as chronic rapid resting heart rate, heat intolerance, etc), I went to an endocrinologist who ran various blood tests. ALL normal - including thyroid, hormones, diabetes, etc. Nothing abnormal was seen on the endocrine tests. I was recently looking to get a referral to a rheumatologist, but I am now thinking that going to a uveitis specialist (based on the list I found on this site) would be most effective.

I am assuming it is time to see a specialist. I live in the Melbourne/Cocoa Beach area of Florida. Do you recommend that I try to go to a local rheumatologist first or shall I seek out one of the uveitis specialists on the list provided by this site? The closest ones are 2.5 hours away. The one listed in Ft Lauderdale is closest but it appears that he is a surgeon so I am a bit nervous that a surgeon wants to do surgery before other less-intrusive options. What are your thoughts? Any recommendations for which doc would be best in the Miami, Sarasota, Ft Lauderdale, Tampe/St. Pete/Clearwater choices on the specialists list? What other advice do you have for me? What should I expect in the coming months and years?
Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Re: Looking for advice - recurring iritis

Post by Mike Bartolatz »

welcome to the group!
I do recommend that you contact DR Janet Davis or DR Victor Perez at Bascom Palmer Eye Institute. ONLY one of them in my lay opinion can figure this out and employ a corticosteroid sparing approach to treatment for you recurrent uveitis. you might explore other inflammatory disease processes such as Sarcoidosis or Systemic Lupus erythematosus as possible underlying causes with our sun intolerance and other symptoms. a Serum test for ACE unless highly elevated would be useless and you would require additional tests such as XRAY etc for sarcoidosis. Lupus has antibody Markers that could be checked for such as SSA and SSB, Smith antibody etc. if you have dry eyes and dry mouth those can be biopsied for evaluation.
DR DAvis does travel to other cities in Florida from time to time so once you establish yourself as a patient you might be able to get a follow up at another location. ruling out pathogens is critical too as steroids make things worse as can other steroid sparing drugs that might be required in the future. depending on how the cells appear inside the eye, it can rule in or out various systemic causes. you definitely have a systemic disease going on and in order to get this controlled and hopefully to remission you will need something besides just steroids. try to avoid sun exposure to your skin and to your eyes as Vitamin D is produced by them and if it is sarcoidosis vitamin D can make it worse both with the eyes and systemically.
DMARD drugs might be in store down the road such as methotrexate which works very well in sarcoidosis patients. other classes of drugs can be added to the mix if Methotrexate alone doesn't get you to 'off all steroids without inflammation'. wear sunscreen on your face, wear clothing to block sunlight and wear tight fitting wrap around polarized sunglasses while outside. if you wear glasses, they make fit over sunglasses available in the sunglasses section of Walmart for about 20 dollars. dark green for sunny days and brown for overcast days. this will help with aversion to light as well as to keep the sun from hitting the retina which can then signal vitamin D to be produced by the body.

write down all of your symptoms to include the rapid heart rate. this can occur in Sarcoidosis patients when cardiac sarcoidosis is present. you need to get this treated soon BTW. Drugs to lower ACE levels are used to treat the kidneys and the heart. another drug can be added to help with the rapid heart rate.

go to http://www.uveitis.org PATIENT information section of the site and then go to the specialist list for contact information for DR Davis and Perez. DO NOT ACCEPT ANYONE ELSE when you call. gatekeepers who answer phones will often send you to someone else.

I hope this helps,
Mike
Mike Bartolatz
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evankmd82
Posts: 4
Joined: Mon Feb 16, 2015 10:22 am

Re: Looking for advice - recurring iritis

Post by evankmd82 »

Thank you very much. I will contact these doctors. I notice you mentoned and aversion to the sun. I do not have any reaction to the sun but instead meant that I have heat intolerence. Maybe a better way to put it is that I sweat excessively (more than anyone I have ever seen) and I seem to run out of steam and breath faster than most people my age (32) although I may just be very out of shape. Does this make anything different? Would you still suggest avoiding the sun?
Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Re: Looking for advice - recurring iritis

Post by Mike Bartolatz »

fatigue can be a problem with sun exposure with some inflammatory conditions. bring this up with the doctors and take their advice. I am not a doctor.
just mentioned it as it can occur with Sarcoidosis and systemic lupus erythematosus patients in which uveitis can be present.

take care,
mike
Mike Bartolatz
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evankmd82
Posts: 4
Joined: Mon Feb 16, 2015 10:22 am

Re: Looking for advice - recurring iritis

Post by evankmd82 »

Thank you. I have an appointment with the doc you recommended in Miami in March and also made a follow-up appointment with my local ophthalmologist next week. Meanwhile, I am continuing to take the eyedrops, which seem to be somewhat effective for now. I am now very afraid of the side effects of prednisone drops per what I read on your site and I know the iritis will come right back as soon as I start to wean off at this point.
Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Re: Looking for advice - recurring iritis

Post by Mike Bartolatz »

it takes about 850 drops before the start of cataracts so don't be too worried right now. just make sure you always get your eyes and pressure checked out to make sure that the pressure doesn't go up with the steroid. there are NO symptoms in most cases of elevated pressure that can do some damage. if pressure is extreme, it can cause vomiting to occur but this is pretty rare.
steroids have to be used to put out the fire of inflammation. the steroid sparing approach to autoimmune uveitis takes about six months to get the DMARD drug to work and steroids are slowly tapered to get you to off all steroids without inflammation. I hope this helps to calm you down. allow Dr Davis to control your care and if the local ophthalmologist disagrees, just see her. often the local doctor will tell you that if you develop cataracts they can be removed and if pressure goes up there are drops to use to lower pressure. yes this is true but you want to try to avoid these consequences if at all possible. elevated pressure cost me permanent vision loss, a steroid only approach to recurrent uveitis allowed cystoid macular edema and epiretinal membranes to form on my eyes with permanent damage done. I also developed optic neuritis. this is why I do my online support work, so that people don't end up like me with disability. Today there is no reason to become blinded by uveitis in most cases. with treatment and without the above complications developing your vision should return to about where you are now.

wish you the very best,
Mike
Mike Bartolatz
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