eyes involvement ?

[Alysia]

Thanks for your wisdom and caring Michelle. You are so amazing and I love you. I have decided to follow your advices: I searched in a hospital that I didnt checked in the past, and found an eye dr. Who knows vasculitis. Totally divine providence (my sweet keeper helped from above). Seeing her in the hospital is too long procedure. I talked with her and she will see me tomorow night in her private clinic (post my sleep hours). It will cost me but I really need my eyes. Untill then she said not to use any drops. Just like you said, Michelle.

[annekat]

Thanks Anne, for always being kind and sweet. I love you. Thanks for your comments about "keeper". I am not sure if Phil's friend said that I am a keeper from his point of view or from Phil's. Anyway, Phil is my keeper ♡♡♡

I think he probably meant it from both points of view. He liked you and could see how happy both you and Phil were together.

It's great to hear about the new eye doctor and that she can see you so soon. Thanks to Michelle for steering you in the right direction.

[Lori]

Hello everyone I am new on here so I see we are all talking about the eyes I am having problems with my eyes i have blurry and double vision and a lot of pain in my eyes I have told all my doctors about it one said that it's not because of the wegener's and the other says it is the eye doctor has given me restasis but all it is doing is giving me a rash on my face and my eyes are still blurry I have reported it to my other doctor that it was not related to the wegener's still have not heard back from him on what to do about it it seems no one cares about this disease it's bad enough there is no cure for it it alway comes bad if your luck enough to stop it they keep on give me all these meds and I am not even getting better all I get is more weight from taking these meds does any one one here know if it's alright to take a detox teas or diet tea while on these meds I am taking methotrexate and prednisone and so many other meds they are saying that I have a fatty liver and that I need to lose weight but the doctors are the one that gave me all these meds that made me gain all this weight now they want me to lose it I am so lost in this fight help!,,,

[annekat]

I think there can be various causes of double vision. In my case, there is some erosion, over time, by the disease activity of Wegeners, of the thin sinus bones that are right under and help to form the floor of the eye socket. My eyes do not sit properly in their sockets so they have trouble working together to focus on objects. This is irreversible and adding prisms to my eyeglass prescription is the only solution offered so far. Some days it is better than others according to how tired my eyes are. Another member mentioned prednisone as a cause of double vision; these things seem to be different for everyone. Blurriness isn't a real issue in my case, and I know there are various eye problems with WG that we don't all get. I can't answer your question about the detox tea, but assume it would be OK as long as you aren't using herbs that are said to boost the immune system which you are trying to suppress. Echinacea would be an example of one not to use. Others are more knowledgeable in this area and will have more to say. Good luck, and welcome to the forum.

PS, you might want to start an introductory thread under New Members Introductions and Stories, from the main forum page. You migiht draw more attention that way to your specific experiences and concerns.

[mishb]

Hey Alysia,

Wishing only good things for you at the eye doc's tonight.

Are your eyes feeling any better?
I hope she can give you some answers and find some relief for your poor eyes

[debra]

Michelle, when seeing you pop in yesterday, i thought it was today, already! Haha... Now, im all confused! Seeing you, Michelle, causes me to look into the future! Michelle, amazing you remember dates so well... I thought alysias appointment was yesterday. In fact was sending an email, when you had just posted... Short term memory, not so great lately! Alysia, good luck, and if you can get the genteal drops i mentioned, they are safe, and really help... No reason why they cant be used with any treatment either, but of coarse check... Alysia, all the best! Deb...

[mishb]

That's funny Deb. It is still the same day for me, morning and now night, but I can understand how it is two different days for you guys. That's awesome

Maybe it is I that has Alysia's days wrong, because of the different time zones.

Okay then, good luck Alysia, or I hope you have received some great advice.

[Alysia]

Hello everyone I am new on here so I see we are all talking about the eyes I am having problems with my eyes i have blurry and double vision and a lot of pain in my eyes I have told all my doctors about it one said that it's not because of the wegener's and the other says it is the eye doctor has given me restasis but all it is doing is giving me a rash on my face and my eyes are still blurry I have reported it to my other doctor that it was not related to the wegener's still have not heard back from him on what to do about it it seems no one cares about this disease it's bad enough there is no cure for it it alway comes bad if your luck enough to stop it they keep on give me all these meds and I am not even getting better all I get is more weight from taking these meds does any one one here know if it's alright to take a detox teas or diet tea while on these meds I am taking methotrexate and prednisone and so many other meds they are saying that I have a fatty liver and that I need to lose weight but the doctors are the one that gave me all these meds that made me gain all this weight now they want me to lose it I am so lost in this fight help!,,,

welcome to the forum Lori. the blurred vision and the aching eyes can be wg activity. go to an eye dr. to do all possible tests. if you have an inflammations in the eyes you will need drops and or stronger treatment then methotraxat.

[Alysia]

I went to the new eye dr. yesterday's night. (Feb 29)

another BIG WOW : 8 years with wg, I saw more then 50 docs of all kinds, never saw a doc who saw more then 5-8 weggies. and then yesterday I have found this new doc: she just came back to Israel after working in London in an eye hospital, in unit for vascullitis patients !
Divine Providence for sure. and I know that it is the work of my angelic dr. Phil, helping me from his good place in heaven. he must be very close to God to be able to help my like that.

it was pure pleasure to talk with her. such a difference. I even told her about our forum and she was impressed.

so, she checked me. she put special drops in my eyes, and then in few min all the blood veseles disappeared. it was so nice to see my eyes white again. it lasted only 30 min but it was a good sign. she said that I do have an inflammation, wg related plus dry eye, also wg related. she said that it might be Episcleritis and conjunctivitis. she said that it is mild. she gave me 2 kinds of eye drops:

Lotemax - contains loteprednol etabonate. means pred drops. with no antibiotics. 3 times a day for a week. then 2 times a day for another week. (I write all the details if someone will want to compare treatment)

refresh - eye drops for dry eyes. she gave them in ampules for 24 hours use only for each ampule. she said that when it comes in a bottle it contains perservatives ingredients which might cause me more damage. I can take them as much as I want but with interval of 30 min at least between the other kind of drops.

she saw the beginning of cataract in my eyes. (thank you pred)

she thinks like my wg dr. that its better to wait this month for the rtx to work. not to take another one right now. so I am glad I have second opinion from a real wg expert for that. she said that the eyes are not in danger now.

but, truth is I feel sick. no more night sweats but very tired and general feeling like flu but not having a flu. body aching. this morning until I bought the drops, it was unbearable. eyes red, swollen, burning like hell, aching all around up to the forehead and down, and also white productions at the corners of the eyes. after 2 rounds of the pred drops and countless of the other drops, not feeling much better. yet.

for now, I only feel better when I close my eyes, problem is that I cant do what I have to to do with closed eyes.

at least I know that my sweet dr. Phil is in charge from above.

Thank you all for your caring and kindness. I love you.

[Pete]

Great news about your new eye doc!! Here's hoping your health improves under her guidance. Here's a little prayer for you: "God, please give me patience -- right now!!" ;-)