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#509767 - 03/07/15 04:32 PM Newbie with iritis question
WilliamA Offline
New_Member

Registered: 03/04/15
Posts: 3
Hi, I am the new kid on the blockÖ have been browsing this site for a long time and finally registered.

I was diagnosed in 2010 by accident. I was referred to an O.D. because of an eye infection and she suggested to be tested for AS. My family physician had no clue, I caught him googling AS when I went to see him for the test results. For 30 years I lived with back, shoulder and neck pains without thinking much of it. My family doc blamed overworked muscles, age, etc..

I started with the starch free diet shortly after I was diagnosed in 2010, and my symptoms basically disappeared. They stayed away for about 2 years until I started eating starch againÖ.. Over a period of about 3 months they slowly came back, including iritis.

I am back on the diet, and have very few AS Symptoms other than iritis. I do not see a rheumatologist or take any medication (yet). I am tryinga to postpone the medial route as long as possible.

I have been able to control my neck and back inflammations with an InGaAIP/GaAs laser (pulsating/alternating). I use a LLLT (GaAs) laser on acupuncture points in combination with acupressure for my iritis and other common health issues. I am able to keep my eye pressure around 14-16.

My iritis episodes are very mild. They clear up within a day or 2 with Durezol drops. The problem is that I am on these drops about 1 week every 6-8 weeks. As a result, I am starting to develop glaucoma. Although still borderline, my OD wants me to see a glaucoma specialist and start with eye drops or even surgery. I am not ready for that yet.

I wonder if there is an alternative route for the iritis. It seems that the Durezol and comparable eye drops inevitably lead to glaucoma which results in more issues.
All advice appreciated.

William

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#509770 - 03/07/15 06:09 PM Re: Newbie with iritis question [Re: WilliamA]
dmx07 Offline
Second_Degree_AS_Kicker

Registered: 12/21/14
Posts: 202
Loc: Bulgaria
Hi William,

How old are you?

I have glaucoma too.

You should stop the steroids immediately how was your eye pressue last time you went for a check?

If you stop the drops pressue might lower substantially in a few weeks so you can avoid risky glaucoma surgery.

Autoimmune diseases are high risk for glaucoma so it's good you caught it early. Constant inflamation in the eye can also trigger glaucoma so you need to take this seriously.

I suggest a visit to a rheumatologist as soon as possible you must get the eye inflamation down.

AS is a horrific disease.

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#509771 - 03/07/15 08:57 PM Re: Newbie with iritis question [Re: WilliamA]
Eyeblog Offline
Member

Registered: 12/22/13
Posts: 39
Loc: North America
Hey William,

First off, sorry to hear about the iritis. I have it and hate it. Your case sounds similar to mine--mild yet persistent. I've had about 30+ cases (if you count re-flares, etc.) but they are under control quick with Pred Forte plus some of the other advice here (NSD, Dragonslayerís protocol).

Many times Iíve had pressures over 23 and sat with Ďglaucoma dropsí in front of me, but luckily my flare has resolved and I didnít have to start treatment. Iím not a doctor, but many ophthalmologists will tell you if you have a healthy optic nerve, a bit of pressure (23-25) won't hurt for a short time (1-2 weeks) if you are tapering. I donít know your situation, though, so it's wise to see a specialist.

For me, the key question would be is whether or not you are responding to the steroid drops. Durezol is known for spiking pressure (so is Maxidex and other gels), so you might have ocular hypertension caused by the steroid but not necessarily glaucoma (unless of course there are other indications, e.g. you've spiked when you are off the steroid drops). Pred Forte is slightly less hazardous in terms of spiking pressure, but if you respond to one steroid, you often respond to them all (my ocular pressure spiked on steroid nasal sprays).

The main thing is to get the eye quiet and then taper off SLOWLY to avoid re-flare (which seems to me like what is happening with you every 6-8 weeks). My pressure has been fine on one drop of Pred a day, long term, when I needed it. Once your eyes are quiet, you might also try another drop like Lotemax which is a milder steroid but doesnít have the pressure side effects (Iíve lowered my pressure while maintaining steroid treatment with this drop.)

Anyhow, the good news is that there are drops out there for pressure--and while itís awful to be taking another drop, it also isn't as bad as some of the other complications. Make sure you get the right kind of drop for ocular hypertension, though, as some of the side effects of these drops (alpha agonists) are (drumroll) iritis.

It sounds to me like you need to see someone specialized in uveitis, as your time between flares is very little. As you know, long term use of the steroid drop is not good. You need to resolve the flare and taper very slowly and if you can't get off the drops, you need to consider broadening things a bit to include other modalities, for example: an NSAID (many on this board will caution you about this and I agree, but Celebrex has gotten me out of a few flares) or even DMARDs/biologics (helped a lot of people on here, but get on the right one e.g. enteracept is linked to uveitis).

The other good news is that the NSD might help (it has for me at least) and so had Dragonslayer's iritis protocol. I admit I was skeptical at first but thankful in the end. Also, I've found that Voltaren gel on the upper neck (around c1/c2) with ultrasound has helped, at least with the pain.

TL;DR: See a specialist, but a uveitis specialist (ocular immunologist) would be the best bet--Talk to Mike B. at Iritis.org/Stephen Foster's team at MERSI; if your eye is quiet, taper off the drops slowly (i.e. with medical assistance) and see what happens to your ocular hypertension then. Hope things are quiet soon.

J.

p.s. Sorry for going on but, just re-read your post--if you are only doing the treatment for 1 week when you flare, it could be you are not tapering long enough and re-flaring and thus prolonging steroid exposure and therefore raising pressure. Even in my mildest episodes (quiet within hours of starting drops) it's over a month of tapering the steroid drops. A slow taper is much better at getting into remission and allowing the pressures to normalize.


Edited by Eyeblog (03/07/15 09:13 PM)
Edit Reason: p.s. added
_________________________
My blog on iritis and uveitis: http://eyeblog.livejournal.com

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#509778 - 03/08/15 12:22 PM Re: Newbie with iritis question [Re: WilliamA]
dmx07 Offline
Second_Degree_AS_Kicker

Registered: 12/21/14
Posts: 202
Loc: Bulgaria
Eye pressue fluctuations are hard on the optic nerve avoid steroids at all costs.

Why not try bromfenac instead?

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#509788 - 03/08/15 06:54 PM Re: Newbie with iritis question [Re: WilliamA]
WilliamA Offline
New_Member

Registered: 03/04/15
Posts: 3
Thanks for the replies.

Maybe I was not clear in my original post, but I do not have high eye pressure.

As I mentioned, I can keep it around 14-16 with acupressure and (LL laser) acupuncture. Before I started with the acupuncture/pressure last year, it was in the low 20s.

My problem is the high frequency of the iritis. The suggestion that I taper off too fast could be true. The instructions from my OD are 4 days 4 drops, 3 days 3 drops, 2 days 2, and 1 day 1 drop.
I donít have any pain or other discomfort, just a pinkish patch on my eye, which usually disappears after the first drop.

I had not heard of Dragonslayer's iritis protocolÖ. Iíll look into it.

William

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#509790 - 03/08/15 10:24 PM Re: Newbie with iritis question [Re: WilliamA]
Eyeblog Offline
Member

Registered: 12/22/13
Posts: 39
Loc: North America
Hey William,

The taper you describe sounds really fast to me. It should be longer time with fewer drops. It's hard to find a textbook rule for tapering, but I use what one specialist told me: half the dose/double the time. For example, your 4 days at 4 drops would become 8 days at 2 drops and 16 days at 1 drop. If you start to reflare at any time, you need to increase and start again slower. Most specialists seem to advise fast use of heavy steroids to treat and then taper slow, but will add other drugs if you keep re-flaring over the course of a few months.

Also, I'm not sure how many cells they are finding, but it seems your case is pretty mild (redness and no pain). So I'm wondering why they are using Durezol. THat is kind of the elephant gun of steroids. You might want to switch to Pred Forte part way once your eyes clear (which you seem to say is almost immediately). Finally, if you are not already, hourly use of a preservative free eye drop can help with the post-steroid eye redness.

The suggestion about getting in to a rheumatologist is a good one (don't know if you have the classic HLA-B27+/have SI joint scarring dx), although if you don't have any other symptoms they might be hesitant to start biologics or even heavy NSAIDs when you aren't having any complications. Dr. Foster in Boston has had good success with using Celebrex 200 mg twice a day for two years to achieve a remission, but I have flared quickly when I stopped the NSAID and went back to eating starch after such a protocol. Of course, the problem with NSAIDs are the GI problems which run counter to the NSD theory.

Lastly, if you check boards like these or Iritis.org/Uveitis.org, you'll see a lot of ophthalmologists don't really have a great amount of experience with uveitis--especially as a systemic disease (vs. a complication of surgery, etc.) There are a lot of horror stories from people who have damaged their eyes treating too long with steroid drops, waiting too long to start treatment, etc, etc. If one doctor isn't working for you, find another, preferably a uveitis specialist (although hard to find).

Dragonslayer's protocol is in his signature on these boards. This is a good adjunct to use while undergoing ophthalmological treatment, but unless you are on biologics, steroid drops are the first-line treatment for a flare. (I think he mentions this in his protocol, too.)

Good luck!
_________________________
My blog on iritis and uveitis: http://eyeblog.livejournal.com

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#509811 - 03/10/15 05:53 PM Re: Newbie with iritis question [Re: WilliamA]
Pea Offline
Captain_AS_Kicker

Registered: 02/24/11
Posts: 1968
Loc: Pacific Northwest
I agree totally with Eyeblog. The protocol for getting rid of Iritis is to totally blast it at the beginning with drops every single hour and to taper it slowly for two weeks. I used to get it a lot until I started on Remicade and that took care of that.
_________________________
Pea
Diagnosed with A.S. 29 year's ago.
Diagnosed with Fibro 10 year's ago.
Remicade, Intrathecal Pain Pump 2013

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#509826 - 03/11/15 01:20 PM Re: Newbie with iritis question [Re: WilliamA]
WilliamA Offline
New_Member

Registered: 03/04/15
Posts: 3
Thanks for the information. It does sound like my tapering off is too fast. I will also ask my OD about the DurezolÖ

I have HLA-B27+ but no joint scarring/damage. At least not when they last checked a few years ago.

My last (minor?) flair up that started last week, and was the reason to finally register with kickas, is gone without using any drops. I doubled my turmeric dose to 1 gr. And did about 12 acupuncture points up to 20-25 joules per session, daily for the first 4 days. Saturday the soreness/socket pain went away, and Sunday the red patch disappeared.

Like I mentioned before, I am hesitant to see a rheumatologist, which here in the US means that you start with NSAIDs. According to the statistics, about 70% will develop serious other health issues due to them. The results of eye related treatments are not much better: about 50% are unsuccessful or cause additional damage.

I started with the LLLT (laser) last year after a lot of research. In combination with the NSD it has worked very well for me. I also just ordered Dr. Cayceís handbook as suggested by Dragonslayer.

The steroid drops are a 2nd line of defense for me. I will ask my OD for milder drops and will extend the tapering off period as suggested.

William

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#510115 - 03/31/15 12:59 PM Re: Newbie with iritis question [Re: WilliamA]
Spring Offline
New_Member

Registered: 03/06/13
Posts: 7
Hi william,
I really don't think you should be seeing an OD. That worries me...that's what landed me in the ER last time i had uveitis. I thought she would have enough knowledge to handle it, but she didn't. She was clueless. I went into the ER when it got so bad I couldn't even open EITHER eye even though only the right was affected. It was so bad, that when I opened my left eye, my right eye would hurt because it was used to dilating in sync with my left normally. so I walked into the ER at midnight with my husband guiding the way and a sweater over my eyes keeping both in complete darkness.

ANYWAY. I was referred to one of the best drs/clinics I'd ever been to for any health problem. He was an MD and very experienced in uveitis and knowledgable about HLAB related uveitis! They tapered me off over the course of 2- 3 months or so! I asked a bazillion questions and he was patient and was able to teach me a lot. I'm usually quite suspect of conventional drs/medicine, but I appreciated his knowledge and bedside manners.

This is your vision. only got 2 eyes...I really recommend going to an MD who has experience with uveitis (bonus if familiar with HLAB uveitis). If you're in the Houston area by any chance, I can refer you to my dr. I hope I never have to see him again though! haha

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#510165 - 04/03/15 09:08 PM Re: Newbie with iritis question [Re: WilliamA]
Eyeblog Offline
Member

Registered: 12/22/13
Posts: 39
Loc: North America
What Spring said.

I overlooked the OD was optometry, not ophthalmology. ODs are good for monitoring but you want to have an ophthalmologist on your team at very least--even if you are feeling better--just in case things get messy.
_________________________
My blog on iritis and uveitis: http://eyeblog.livejournal.com

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#511234 - 06/05/15 12:46 AM Re: Newbie with iritis question [Re: WilliamA]
AndyJ Offline
New_Member

Registered: 06/04/15
Posts: 22
Loc: Queensland, Australia
Hey WilliamA,

When I had AS I got iritis about once a year. I took Prednefrin forte drops to help the symptoms go away quicker. A number of years ago I focused on healing my Leaky Gut. I healed my gut just over 3 yrs ago now. Since doing that, I no longer have any back pain and haven't had iritis since. So I would suggest to AS sufferers to focus on healing their gut (the root cause), not treating symptoms.

Cheers,
Andy

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