If you've had eye involvement (scleritis, uveitis, blocked lacrimal duct), how long..

[ArlaMo]

How long after treatment did you finally feel some relief? My eye has been miserable since September. I've been on 80mg pred since mid October (I know! It is so high, but when we tried to bring it down a bit, my eye went crazy. Even now, it wears off around 2am and I can't sleep because it hurts so much.)

I did my first rtx infusion (for this flare) last Friday and have one tomorrow, the 21st and 28th. I keep hoping there will be some relief. Soon. I didn't really have eye issues with the initial onset of the disease, other than a little redness that cleared up with a couple of days of pred.

[Pete]

Are you seeing an ophthalmologist for these symptoms? You might get some more effective treatment - I hope.

[ArlaMo]

I've seen my optometrist (awesome guy, always does research on Wegs for me), a local ophthalmologist a number of times, an ophthalmologist at the Moran Eye Center in SLC (and she consulted with the uveitis specialist while I was there.) I'm going to Portland on the 2nd of January to see another ophthalmologist who is also a reumy (the uveitis guy recommended him). Whew...so, I've seen a lot of eye docs. The uveitis specialist said the rituxan infusions should help - I'm just losing my patience :predrage:

My husband says I am becoming nocturnal since I can't handle much light at all...

[carriej22]

Before I was diagnosed my eyes hurt so bad. I kept a cloth on them all the time, couldn't even look at the TV.

Rituxan totally fixed them, one treatment and they were much better. However it really took all 4 before my eyes stopped causing me grief.

My eyes are still not 100% they way they were, but Im just happy they improved.

[ArlaMo]

Carrie - good to know! I've just had one rtx treatment and my eye actually felt pretty good that day and the next, but it is back to miserable. Hopefully, I'll have a similar experience!

[carriej22]

Yeah, I feel like mine were still sensitive between treatments. I was also going for solumedrol (spelling) between my rituxan and that helped too, more than the pred.

I had my 2nd infusion the day before my wedding and I remember my eyes hurting from the strobe light during the dance and I told the DJ to turn it off. He said no at first and then turned around and realized it was the bride.. He was pretty fast turning that godforsaken thing off LOL

[drz]

How long after treatment did you finally feel some relief? My eye has been miserable since September. I've been on 80mg pred since mid October (I know! It is so high, but when we tried to bring it down a bit, my eye went crazy. Even now, it wears off around 2am and I can't sleep because it hurts so much.)

I did my first rtx infusion (for this flare) last Friday and have one tomorrow, the 21st and 28th. I keep hoping there will be some relief. Soon. I didn't really have eye issues with the initial onset of the disease, other than a little redness that cleared up with a couple of days of pred.

I had scleritis before I was officially diagnosed with Wegener's and believe it was one of many of my symptoms before official diagnosis. My usual opthamologist was unavailable but her colleague who was an optometrist evaluated me and treated me. I think I took large dosages of Tyenol and used some eye drops and my symptoms seemed better in a few days. However I think the treatment lasted a couple weeks longer. The doctor was one of two who suggested i could have some autoimmune disorder like lupus to cause my scleritis, but also said sometimes it just happens for unknown reasons. I also had eye infections during one flare and which were also treated with various eye drops (steroids and antibiotics) and they got better in a few days.

My doctors have told me getting quick eye care is important to prevent any loss of vision from the GPA just like it is to try preserve your hearing too. They couldn't save my hearing but have preserved my vision so far.

[mishb]

One of my initial symptoms was uveitis and the pred combined with steriod drops help relieve the pain and the redness (my vampire eyes) went away.

It does come back whenever I eat something wrong.......a severe allergy now, if you like, to citrus of any kind or even anything with citric acid in it, which includes bread, sauces, fish products (lemon) etc. It may be worth looking into these ingredients as well.

I see the opthamologist next Friday to discuss the next course of action (especially now that I start reducing the pred). I am also taking plaquenil, so the eyes need to be checked every 6 months for any changes.

[JeanMarie]

I've had uvietis-but nothing as bad as yours. The drop durezol is supposed to be more effective than pred forte, but I can't imagine it being more effective than 80 mg pred. You sound as though you have good doctors so hopefully the rtx will do it. Sometimes it takes a few weeks.

[jola57]

Same here, I used the steroid drops at the beginning for 3 week combined with hi Pres by mouth. After 3 weeks it started to get better

[ArlaMo]

Just had my fourth infusion of rtx yesterday and things are finally starting to get a little better. Whew! Four months of eye pain and not being able to see if there is much light - my husband started calling me his nocturnal wife :razz:

Hopefully, things will continue to improve. I go back to see Dr. Koening on the 7th, so we'll see if I get to start tapering the pred yet. I feel like a balloon about to pop!

[Sangye]

I hope the rtx puts the Wegs dog into a nice deep sleep, ArlaMo!