Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group New to Forum, Eye Question

Hello All,

I'm glad I found this site!! A brief history is that I'm almost 31 have been dealing with AS since 1997. I was just approved for Enbrel in October, and started in in November.

My question is more specific. Back in December of 2002, I was feeling what seemed like my third case of Uvietis coming on. I went to the eye doctor right away. He really didn't see any inflammation, yet we treated it as if we caught it early. As the days and weeks went on, the light sensitivity and pain worsened substantially. I was sent to a Uveitis specialist in Birmingham, Alabama (I live in North Alabama), and he couldn't find any signs of the inflammation either. After scanning for various tumors, etc, it was determined that my only resort was a pain clinic. Up to that conclusion, the pain and light sensitivity was so bad that I had repeated trips to the hospital despite oxycodone derived narcotics. I felt like I was literally going crazy.

After trying everything possible at the pain clinic, we were left simply treating the symptoms. Thankfully, the pain medicine has given me much of my life back. I do have to wear sunglasses almost everywhere...

Now this is only an educated guess, but my pain doctor came to the conclusion that I have nerve damage, caused by the Uveitis attacks. I guess my point here is to find out if anyone else is experiencing permanent type symptoms from the Uveitis?

Thanks and God Bless,

Steve P.

WELCOME, Steve P:

What is the medicine that has provided you with relief?

I don't think that iritis would cause a permanent photophobia. Like AS, it is episodic and should not be constant. I have not heard of nerve damage due to uveitis, and do not know by what mechanism this would happen, but I guess this is a new one for the books! This is a bit scary, since if it is untreated iritis it could lead to destruction of your sight. I wonder whether the pain you would experience without the medication is similar to what you experienced with iritis; in addition to the photophobia?

Good luck to You,
John

"On two occasions, I have been asked [by members of Parliament], 'Pray, Mr. Babbage, if you put into the machine wrong figures, will the right answers come out?"
Charles Babbage

Steve,

Welcome to KickAS, I 've just had a similar experience with my eyes, I know there's overlap with some pain from the neck affecting under and above the eyes, this is the ocicptal nerves getting inflammed/irrittated and also the trigernimals in the face.

However it improves with anti biotics and both topical and oral steroids.

Are you B27 positive or negative? Negatives can get other problems...check out www.uveitis.org and search on B27 negative

I went for a massage and the person is visually impaired he was a B27 +ve and about as blind as you can be. The dr.s could nlt work it out.....

David

Hey Steve,

What other medications are you on besides Enbrel? Have the doctors considered the light sensitivity could be coming from any of the other medications you take? I know my light sensitivity has gotten worse when taking some of the antidepressants I have been on in the past. The pain from lights hitting my eyes has been quite severe and I usually wear sunglasses when I go outside. Driving at night has become almost impossible because head lights cause pain and make it very hard for me to focus on the road.

Brent





Sandy

First off, thanks for the replies...

I'll try to answer as many of the questions I can in one swoop:

John,

At first I was put on Methadone. It literally changed my life within a week!! It has a somewhat negative rap due to it being used as a addiction treatment, but it is a very legit pain medicine. If you're not familiar with the in's and out's of it, so to speak, I can gladly give you the run-down.

Anyway, the pain doctor I see had already had success with it in other patients that had eye/head type pain. He had done multiple nerve blocks, including one where he stuck a needle through the hole in my cheek bone. Not fun, to say the least. Strangely, both the injections and the oral steriods we tried seemed to make the pain worse.

Unfortunately, after a little over a year, the Methadone starting causing Vertigo. We tried everything to rule it out to no avail... Right now I'm on MsContin. It doesn't work as well, but still helps enough to where I can get along with daily life.

I've actually had one bout of Uveitis on top of my normal pain and light sensitivity. The two pains are different. Uveitis is more centralized in the center of my eye ball, like a stick in the eye. Whereas the other pain seems more centralized in the nerves running under my eyebrow, under my eye, and down my nose. Strange, I know, but the "experts" pretty much gave up on figuring out what it was. So, what do you do...? ; )

David,

Yes, I am B-27 positive and the location of your pain seems similar to what I described above.

Brent,

I also take Bextra and Lortab. At the time the onset of my pain first started, a doctor did have me on Wellbutrin and Paxil. Both were prescribed for nerve pain, and neither of which I take anymore. Paxil was a rough road coming off of, but that's another story. I still have to wear the sunglasses and I too cringe at the sight of headlights. Before the pain medicine, I would have to literally cover my head if I was in a car at night (from the headlights). It was very hard and very dangerous for me to drive...

Stay strong, and thanks again for taking the time to reply.

Steve

Steve,
Have you ever been tested for dry eyes? Dry eye symptoms are as variable as the number of people who have it, but generally it is pricking on the eyeball. Silly as this may appear when you have mentioned you have been examined in and out...

I had non stop eye pain for about three years from 95-98. Any use of the eye was hellish. My eyelids would periodically twitch as if I was winking. No diagnosis was made after extensive investigation and I was just told to learn to live with it. My pain used to be on the upper lids running down my nose, mainly on the left eye. Certain movements of the eye produced a flashing pain across the eyeball. It went off on its own in 98. It returned again in 2002, and it was around that time it was diagnosed as a dry eye( due to my sjogrens). Artificial tears cleared most of the pain, but I still have the odd piercing pain that comes with sudden eye movement, and I have found no answers to date. Just learnt to live with it, no idea of what the long term impact may be. I guess some problem with eye muscles....

Ram