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Iritis / Uveitis, Synechia, and Glaucoma #282613
02/11/19 09:42 PM
02/11/19 09:42 PM
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Arizona
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Vinqa Offline OP
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Hi, friends. I've been lurking here for some time and today I wanted to talk about iritis.. specifically my own case of AS-related complications and if anyone else has experienced similar issues / could provide insight on this journey toward treatment.

My particular flavor of AS, while harboring much of the usual spine / joint pain, has decided to manifest itself in massive iritis flareups resulting in diminished vision and extended inflammation. I had my first brutal flareup back in 2017 that landed me in the ER and it was then the AS diagnosis was solidified. Due to the severity of the flareup and the absence of dilating agents to prevent it, my pupil became 100% fused to my lens. Synechia, as I was told the term was, wasn't something I was advised I'd need continued treatment for, but I couldn't keep seeing that particular ophthalmologist who had been emergency treating me for the iritis as his practice didn't take my insurance.

Flash forward to this year. For the past month I have been experiencing a rather radical iritis flareup that has now gone on for about month. Going outside is torture as the photo-sensitivity is maddening as is the referred pain surfacing in my cheek and browbone areas. I have since been prescribed Prednisolone drops (steroids) that I take every hour for the inflammation, Atropine (dilating agent to attempt to address the synechia), and Timolol (a fluid agent that the synechia is preventing from reaching parts of my eye, resulting in glaucoma). The prednisolone while administered on an hourly basis isn't quite enough. I found I was still waking in the middle of the night to excruciating pain. I called the ophthalmologist I'm now seeing and was called in to receive an injection of 50/50 kenalog and dextromethorphan that provided about two days of relief. I was to remain on the prednisolone and other eyedrops as well, but after those two days of relief, I'm back to more pain and photo-sensitivity as well as diminished / blurred vision.

I go back Thursday in order to report on my progress, but I find it more and more difficult to stay positive. To deal with the synechia, I've been scheduled for a laser peripheral iridotomy next week to prevent the glaucoma from worsening, but I'm more concerned with the fact that the inflammation is still being entirely persistent, even while I've been taking NSAIDs for pain in addition to all of these eyedrops.

Has anyone else had particular problems with iritis / uveitis? Has anyone had any issues with a laser surgery to correct pupil fusion and can report the success? Any input is greatly appreciated. smile


Mom of 2 • 32yo • HLA-B27+ • AS+ • Currently changing diet, unmedicated • Recurring Iritis / Uveitis flares. Gotta stay positive!
Re: Iritis / Uveitis, Synechia, and Glaucoma [Re: Vinqa] #282616
02/12/19 02:03 AM
02/12/19 02:03 AM
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BigDaddio Offline
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First of all, welcome to the forum!

Second...wow has iritis hit you HARD! For that first massive flare up, how long did you have symptoms before you sought medical care? My eye doc tells me to call ASAP if I feel another coming on (I've had 12 episodes in the last 8 years....possibly have SpA still awaiting confirmation). My first episode was also my worst, but despite all the recurrence I only have just started to scar (just starting to fuse). Definitely has affected my vision. My eye doc said that any future surgery on the eye will be risky due to chance of inflammation. From what I've seen elsewhere, eye doctors tend to be very careful about performing surgery on patients with recurrent iritis, and you should probably expect a flare during the post-op period.

Sorry, may not be much help, but hang in there and listen to your doc. Make sure you are comfortable with his/her plan for dealing with inflammation caused by the procedure.

Re: Iritis / Uveitis, Synechia, and Glaucoma [Re: Vinqa] #282620
02/12/19 02:42 AM
02/12/19 02:42 AM
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SouthernMoss Online
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I'm a little surprised your eye doctor didn't move you up to Durezol which is a more potent steroid eye drop than Prednisolone. I am also concerned about you having surgery while you are still in a flare.

My eyes are currently in remission, thanks to Methotrexate and Humira. But before they calmed down, I found a wealth of information at www.uveitis.org. The site was created by Dr Stephen Foster, a renown uveitis expert and researcher. There is even an "Ask Dr Foster" forum where you can ask questions and Dr Foster himself will answer. He can't give specific advice of course, but I found his answers to be very helpful, and still pop over there from time to time just to read. He firmly believes that although steroids may be needed in the beginning to get a uveitis case under control, the long-term goal is to use other medications to put your eyes into durable remission without needing continued steroids.

I would strongly urge you to see an ocular immunologist, even if you have to travel. Preferably one who specializes in uveitis. The uveitis.org site has a list of uveitis specialists. It looks like there are three in Arizona. http://www.uveitis.org/patients/list-of-specialists/united-states/


Ginny - 58 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis, both currently in remission
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: Iritis / Uveitis, Synechia, and Glaucoma [Re: Vinqa] #282624
02/12/19 12:28 PM
02/12/19 12:28 PM
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Whidbey Island WA
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WhiteCell Offline
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Agree with Durezol. Remicade is the drug of choice for AS/Uveitis. These are 1st line treatments for the degree of inflammation. My doctor Francis Mah, in San Diego is close to you for a 2nd opinion. He is with Scripps Health. I can facilitate if you need an appointment.

The Brand name Pred Forte is better than generic prednisolone. Shake the bottle well before using 30-40 times.
Guard your eye from light, ask the doc if you can change to Durezol and begin Remicade.
Treat the pain with non narcotic long acting Tylenol and NSAID' I find Ibuprofen worked the best for the headache.


Starting at 18 yrs old; 1971 Reiter's Syndrome. Diagnosed AS 2001.
Started Remicade 2002 - 5mg/kg every 7 weeks.

Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by Radio Frequency Ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
Re: Iritis / Uveitis, Synechia, and Glaucoma [Re: Vinqa] #282630
02/12/19 04:42 PM
02/12/19 04:42 PM
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WhiteCell Offline
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I would also add that during very bad flares, I was using the Pred Forte every 30 minutes for a day or two to get the inflammation under control. When my flares were this bad I was seeing my Ophthamologist daily. I have not had a flare since beginning Remicade.

Here is a center for excellence in San Francisco which I used in the past.
https://proctor.ucsf.edu/clinics/uveitis

Included here is a study showing remission with Remicade,
https://www.ncbi.nlm.nih.gov/pubmed/24011995

Last edited by WhiteCell; 02/12/19 04:51 PM.

Starting at 18 yrs old; 1971 Reiter's Syndrome. Diagnosed AS 2001.
Started Remicade 2002 - 5mg/kg every 7 weeks.

Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by Radio Frequency Ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
Re: Iritis / Uveitis, Synechia, and Glaucoma [Re: Vinqa] #282634
02/13/19 02:28 PM
02/13/19 02:28 PM
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Arizona
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Vinqa Offline OP
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Thanks everyone for the support and responses!

I go back to the ophthalmologist tomorrow, but I've noted that the pain / sensitivity / iritis in general has again persisted despite the kenalog / dextromethorphan injection done last Friday. I'm in a fair amount of pain at present, still referred to my cheekbone, and I'll definitely ask about the Durezol and bring up concerns regarding post-op inflammation following the laser procedure to be done next week.

Yeah, they have me on the generic pred, but I'm also struggling with insurance; I find that the pharmacy informs me that I can only pick up refills of prednisolone at certain time periods (I'm taking them every hour as prescribed) and oftentimes I'm almost entire out of the drops before my insurance tells me I can pick up another prescription. As a result I'm doing what I can to minimize pain here at home with warm / cold compresses and NSAIDs, but they're only so effective.

I know WhiteCell mentioned protecting the eye from light. Should I be? If so I can go ahead and put to use these eyepatches I managed to purchase.


Mom of 2 • 32yo • HLA-B27+ • AS+ • Currently changing diet, unmedicated • Recurring Iritis / Uveitis flares. Gotta stay positive!
Re: Iritis / Uveitis, Synechia, and Glaucoma [Re: Vinqa] #282635
02/13/19 03:37 PM
02/13/19 03:37 PM
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SouthernMoss Online
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Protecting the eye from light will help with the pain. Use the eye patch or dark glasses (even indoors).

Talk to your ophthalmologist about the issue of running out of drops before the refill is due. Maybe he has some samples that you can use between refills, or maybe he can adjust your prescription. And be sure to shake those little bottles vigorously, as WhiteCell pointed out. Prednisolone is a suspension, and you have to shake it hard and long to make sure it is thoroughly mixed.


Ginny - 58 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis, both currently in remission
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: Iritis / Uveitis, Synechia, and Glaucoma [Re: Vinqa] #282642
02/14/19 11:11 PM
02/14/19 11:11 PM
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BigDaddio Offline
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Definitely use an eye patch if necessary. Just don't do what I almost did and wear it into a movie theater when True Grit is playing, lol (I nearly did this during an episode of uveitis when the remake came out several years ago!! Made me laugh so hard)

Re: Iritis / Uveitis, Synechia, and Glaucoma [Re: Vinqa] #282652
02/17/19 02:44 PM
02/17/19 02:44 PM
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Whidbey Island WA
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WhiteCell Offline
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Pharmacies....ah yes....You have to fight with them

Make no mistake--it can get low down counting drops and threatening to sue them if you run out of drops. Been there and done that.

I felt like I was just a mean guy. The pain is intense and the fact they were nickeling and diming me about MY EYE really pissed me off. Now I just go right for the jugular when I get a silly response. I have learned how to make people politely uncomfortable to really uncomfortable.

You are # 1.

Last edited by WhiteCell; 02/17/19 02:45 PM.

Starting at 18 yrs old; 1971 Reiter's Syndrome. Diagnosed AS 2001.
Started Remicade 2002 - 5mg/kg every 7 weeks.

Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by Radio Frequency Ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
Re: Iritis / Uveitis, Synechia, and Glaucoma [Re: Vinqa] #282661
02/19/19 05:05 AM
02/19/19 05:05 AM
Joined: Jan 2019
Posts: 3
Arizona
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Vinqa Offline OP
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Vinqa  Offline OP
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Arizona
Yeah, it's... Really hard to have a civil conversation with people when you're in that much pain. frown

Good news! Iritis is abating in time for the laser procedure, but like what was mentioned here, doc mentioned I may have another flare post-op. Fingers crossed!

Also, I know that marijuana is used in glaucoma treatment - would it work for things such as iritis?


Mom of 2 • 32yo • HLA-B27+ • AS+ • Currently changing diet, unmedicated • Recurring Iritis / Uveitis flares. Gotta stay positive!

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