eyes involvement ?

[me2]

Maybe ask about a bolus of prednisone. I have gotten through more than one crisis period with this including trouble with my eyes. This is a very high dose for two or three days to quiet the immediate problem. On the plus side I agree with Pete that the rtx should be helping soon.

[mishb]

Always in a hurry lovely lady

Deb is right, give the drops a chance. I think it was about 10 days before mine started to clear, and I also increased the pred.

I'm sorry you now have to deal with this. Is there any chance of you seeing an Ophthalmologist for another opinion?

[debra]

Alysia, they say when you start spending alot of time with a friend, you sync together? I had no idea this could happen through the internet! Haha... Seems I'm picking up you're stuff! Calling eye doc, today! Not going through the ice pick thing again! So weird, you no sooner said it, and I get pain, worse than the usual... Never ends! Please relax, best you can, and give the drops, a chance as I mentioned... Also the advice here is awesome on the rtx! That it should start to kick in now... You guys are all so amazing here!!! Alysia, what is the name of the drops? Wondering if its the pred- forte, or the other one they usually use? Good luck, my sister! Deb...

[annekat]

I have Episcleritis now. The eye dr. Gave me drops. I got rtx 1000mg a month ago. Should I ask for more 1000mg ? I need my eyes...

I am very sorry, Alysia. I don't know what that is vs. just scleritis. I don't know what either of them are, really! I only know that at initial dx my eyes were very red, so I may have been heading that way. Drops helped me a lot to clear things up, though I don't remember for sure what drops these were. Initial treatment cleared up everything in my eyes and facial area very fast, that is the more external stuff like headaches, red eyes, hardened veins near the surface, and a general tight feeling in that area. The docs were concentrating on my lungs and sinuses, so that other stuff didn't even really get talked about, and I'm lucky it wasn't serious involvement and could be cleared up easily. I will have to look up more about this to understand what you are going through. I hope it clears up fast and wish I could give more advice on getting another infusion, but I can't.

[Alysia]

Thank you so much, my friends, for being here with me, for your wisdom and support and kindness. I love you.

Pete and Kirk, you sound like my wg doc: I emailed him and he also said I might wait for the help of the rtx that I got a month ago. he said that rtx will reach its full influence only 3 months after I got it so I should expect to get better. he said that I will do labs and go back to eye doc after the 7 days drops. and we will continue from there. he will check me then and we will decide if I will go now for another rtx. so there is a plan. he said that I will not be blind out of the Episcleritis (is he right ?? I am not sure) but he said that it is an indication that the wg is not under control. which he doesn't like.
meantime I have night sweats and feeling sick. so I guess mr. wg came for a visit.

not sure about taking more pred yet, Kirk. I will wait to see if the drops are working.

Deb, Anne, Michelle - about the drops: they are made in Israel and are called: Dethamycin. they include: dexamethasone (corticosteroid) and neomycin (antibiotic). I dont trust much the local eye doc. he said that it is not wg related: "why should it be ? I see here patients with it who dont have wg". but my wg doc said that of course it is wg activity. so I hope that the eye doc prescribed the right drops. he also told me to take them only 7 days. Michelle, you took it for 10 days, so maybe I should take them for more days.... I plan to go back to the eye doc after 7 days.
as I wrote on that thread 2 years ago or so, I searched all over the country and have found only one eye doc who knows wg. but to see her means 4 hours trip each direction by bus, train and taxi (you cant drive after eye check), it will cost me around 400-500 $ and I feel too weak and sick to make that trip.

the eyes looks a bit less red although all the area around them is still aching and I can't read much continuosly.

it is also that the drops, in the first min after I put them, feeling like "whew, what a relief" and then for about 15 min the eye is itchy, I want to scratch it. it this how it should be ?

where is my sweet dr. Phil ? I really need him now

thank you again. God bless you all.

[debra]

Hi, Alysia! The drops are similar to pred- forte, only these have no antibiotic in them and youres do... I think you're good here Alysia... Definitely in my opinion, wegs related! Yes, and no doubt to much stress for you, is causing issue's? Alysia, please do the drops the way the doc, prescribed, because you doing things different may cause more harm than good... Patience my sister! Hard I know, it is for me! Yes the itching is normal, after initial relief... This should improve as you're eyes get used to them... That's about all I gut! It's to early for me, and only a few hours sleep, as usual... I gotmy call in, to a new eye guy, and he said he'd be willing to work with a Boston specialist! Yay! Ok, so I'm having a huge issue responding here! Don't know what's up lately? Losing posts and having to redo them... Alysia, I love you... Please take time for you! Deb... Xox...!!!

[me2]

It sounds like you are on the right track Alysia. I know how disturbing it is to have eye problems although I have not had what you have. The good thing is you HAVE had treatment and it will catch up to you. I only offered the pred as an idea to discuss with your doc if you were in really serious trouble and your vision was in danger. It sounds like it is not. Hey, thats good news.
Sort of dressed up as bad news.

I have had eye problems for long periods of time ( but not lately) and one thing I used that gave me real relief is the product that we use as a sinus wash- Alkalol. Weird name but the stuff is really great. I made small eye cloth out of old handkerchief pieces and soaked them with Alkalol and laid down with them for about fifteen minutes. Amazing how soothing it is.

It sounds like the drops are a good thing. My understanding of topical steroids is that one of the benifits of them is we can take them longer without ill effects. So it might be just fine, and maybe a good idea to take them longer.
Right now I have just started taking a mouthwash called "Magic mouthwash" that has steroids in it. I have three refills and can take it for a long period of time.

I hope you start feeling better soon.

[Pete]

Alysia, have you thought about doing a pred blast for a few days to knock down what seems to be systemic inflammation? The eye involvement and night sweats are (to me) big indicators that you're starting a flare.

[mishb]

If your eye drops are made in Israel then they are possibly (more likely) different than the ones I had.
I would only take them for the 7 days. Yes, the itchiness was crazy, but you need to resist.

I pray that you are starting to get some sort of relief now

[debra]

Michelle, agree totally... These drops are absorbed into the eye/ bloodstream, and should ONLY be used as prescribed... Even topical creams seem harmless, but not so, the skin is the largest most absorbant organ... So says the one not even getting treatment for her wegeners, well I'm trying... Been trying, and I've been through the eyes, and currently back in... Not to jack the thread here, but saw new pulmonary guy Friday, and he was the first good doctor I've seen, in a very long time... Will he help? Only God knows... Tests lined up, go from there... I guess I mention this as I feel somewhat judged, that I'm not taking this serious by some? Well I am, and have been... Sorry, but I can't help feel this way... No reason mentioning the useless appointments, if I'm getting no where right? Doesn't mean I'm not going, or doing my part here... And as much as is love Boston, I can no longer drive so this is not an option, unfortunately... You, all that have family members ect, that help, well I'm happy for you, and consider youreself blessed, cause you are... Some are not so lucky, also not as lucky with the health care system, that is in NO way fair! Fact, fact... It is, what it is, and I'm making the best of it... Alysia, again please take time for you, this is a flare, in my opinion... Deb...