Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Cystoid Macular Edema?

Which state are you in? 12 hours is a long way away!! I can try to find out if anyone knows of someone closer by for you...

There is also some info on the MERSI site about CME, if you look under the Patient Information: Glossary link.

Yesterday I had an appointment with a retinal opthalmologist. The imaging they had done showed a fluid pocket under my macula and retinal hemorrhaging.

In an attempt to combat this condition we have begun monthly ocular injections of Avastin. This is the same treatment used to treat macular degeneration and eye cancer.

Although I have never heard of this treatment before for someone with AS induced vision problems, the doctor seemed to think it would give me the best chances of a partial recovery.

The injection days will be tough, but I've endured worse with this disease.

Jeekers, Hollingsworth, but at least you have a DX. Best of, with the injectins - don't think I could take em, me! Y're a braver (person) than I am Gunger Din. 'Smile'.

Take care - and thanks for sharing.

Molly C (France)

I've had an ocular steroid injection before, and to be honest I think the thought of it was worse than the injection itself!

Avastin seems a sensible approach - I've heard of it being used in uveitic eyes before. A quick search on the MERSI site found the following Q&A which seems promising:

"
Q: I saw the post earlier on avastin. I was just wondering if it is highly effective with cme caused by active uveitis. Besides the cme our daughters eyes are clear. Can it produce a remission?

A: No therapy for macular edema, in my opinion, is particularly effective for "highly active uveitis". The uveitis must be in remission for any macular edema therpay to work well. Avastin is very effective for treating macular edema. The duration of the effect varies from patient to patient; some need many injections; some only need one injection.
"
...so, hoping that not only will the injection days not be too tough, but that this will be spectacularly effective for you and not many injections will be needed! All the best!

Oh goodness!
I so hope everything goes OK.
You are very brave.
Take care.

How well some people handle the injections varies form person to person. Some people may take the injection and not even experience any pain. People who have sensitive eyes will have more problems than those who do not.

My eyes are too sensitive to wear contacts so I did have enough discomfort that I called in sick for work the day after the injection. For now on I will plan these injections as a two day ordeal and have the time off pre-scheduled.

24 hours after the injection though I hardly notice it. Temporary pain is worth it if it can restore some of my lost vision.

I completely agree with your last sentence! Vision is so very precious...

Here's hoping that you'll quite literally see improvements very soon!

Take care

It has been a while since I posted an update.

At present my vision in my left eye is not all that good. I have peripheral vision but for the most part cannot read with the left eye.

I had a strange reaction from the Avastin injection. The reaction left me temporarily blind in the left eye due to cloudy fluid obstruction. I had a fluid build up in the eye that had the doctors instructing me to apply a prednisone eye drop once an hour and a cylcogel drop twice a day for a week.

On the bright side my vision improved substantially by the end of the second week after the Avastin injection. However my vision started to degrade again.

On week 4 my ophthalmologist decided to do a Kenelog injection instead of an Avastin injection. That was a lot less painful, however my vision seems to still be degrading. As of last week all of the improvement in my vision had been lost.

Next week my ophthalmologist decides if he wants to do another Kenelog injection or another Avastin. I'm hoping for an Avastin as I believe that can help. I don't have much faith in Kenelog.

My greatest fear is that I have been losing cones in the left eye. I don't think cones can be regenerated.

My Rheumatologist is a bit shocked as he has never heard of this happening before and my inflammation remained in check while my immune system destroyed my left eye. Sigh. I have a hard time being patient with Rheumatologists. Lately I find they focus way to much on inflammation and ignore the degeneratory effects the disease can have. They almost seem to be in denial of the diseases nature.

In any case I remain hopeful that I will regain my site. I am patiently waiting for my opthalmologist to make the right decision with treatment and I am trying to coax my rheumatologist into switching me from Embrel to Humira. After 2 years I nearly have made the case for the change. He's still taking a bit of convincing though as he is another doctor that has a Remicade fixation.

I have had Cystoid Macular Edema three times since 12/2005. The CME came shortly after iritis went into full rage. It was always in my right eye only thank you GOD! I say this because if it were in both I would have been blind during the event. I absolutely could not see the big E on the eye chart with the right eye. My center vision in the right eye was completely obscured. I feared the needle in the eye, but it never came to that. My eye doctor gave me prednisolone eye drops. Each time the vision in my eight eye was really bad for about a month and then got better. It took about 5 months each time to recover. I only notice slight distortion remaining in my right eye.

I'm using Humira and not Embrel because of the iritis/CME history.

Sorry to hear about this, Hollingsworth. It sounds painful and worrying. I admire your patience and courage in dealing with it.