eyes involvement ?

[debra]

Alysia, awesome that you found a doc like this! Praise God, and no doubt Phil right there... I'm so happy, no antibiotics in the drops! This sounds similar to my treatment. Wow, sounds funny to say, my treatment! Haha... The one thing actually treated! My pred drops were every waking hour, not an easy thing to do! No! Every waking hour, with a very slow taper, for example decrease by an hour each day, or next day every two hours then three, ect. Spent so much time back and forth to him, the secretary assumed I had a crush on the doctor... I lived there! Ok, so it was yesterday, but that would be today, to Michelle and yesterday to me!!!!! Haha... This day, today really confuses me now! Hopefully tomorrow will be just tomorrow... Michelle, you crack me up! Alysia, I'm so glad for you... I can't wait to see you feeling better... I like the advice on the rtx as well... Alysia I'm praying for ya, always... You know this, already... I love you, my sister... Deb...Xox...

[mishb]

Here I am again with our computer system down at work this morning. It is today morning here Deb and yesterday there - Lol (today is Wednesday 7:45am)
Good news Deb, no typo's in your post


Alysia this is great news indeed. I had two bouts of conjunctivitis in the last couple of months and they never associated that with WG, but I wonder

I'm glad you have found this wonderful eye doctor and hopefully the eyes will come good in the next few days.

Take it easy, and don't stress too much and more importantly ...........

[drz]

Dry eyes are common side effect of Wegs or treatment, especially the prednisone. Scleritis and red eye is another frequent manifestation of Wegs. I too was given Restasis for dry eyes and advised to use Refresh eye drops for the dry eyes. I had to have scar tissue removed after the cataract surgery twice too. The laser treatment is easy and quick to do but it does leave some extra floaters for awhile. Getting rid of the scar tissue made a big difference in improving my vision and getting rid of the blurry, cloudy and foggy vision I had from it.

I envy you for finding such a great Weg eye expert close to you. They are often hard to locate but most good eye doctors can treat most of the problems that are side effects of Wegs or its treatment.

[Middlesista]

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!,,,

Lori - my diagnosis of GPA was made because of problems with my eyes which included pain and from blurry to eventual loss of vision. If you have not already be sure to see a neuro-opthologist

[Alysia]

Dry eyes are common side effect of Wegs or treatment, especially the prednisone. Scleritis and red eye is another frequent manifestation of Wegs. I too was given Restasis for dry eyes and advised to use Refresh eye drops for the dry eyes. I had to have scar tissue removed after the cataract surgery twice too. The laser treatment is easy and quick to do but it does leave some extra floaters for awhile. Getting rid of the scar tissue made a big difference in improving my vision and getting rid of the blurry, cloudy and foggy vision I had from it.

I envy you for finding such a great Weg eye expert close to you. They are often hard to locate but most good eye doctors can treat most of the problems that are side effects of Wegs or its treatment.

Thanks drz for sharing your experience and wisdom.
Do you have any advice how to avoid that scar tissue or is it part of the cataract surgery anyway ?
I didnt know that the pred can also lead to dry eyes...

[Alysia]

Thank you my friends for your kind words and for being here with me. I love you.
Today I feel a bit better, about 8-9 on the scale of agony which was 10 yesterday before starting the drops. Eyes still red, aching etc. Joints also feeling stiffed. Feeling like the tin woodman from the wisard of Oz, without oil.

Technical question: its written in the drops papers that I should pull the lower eyelid and put the drop in the "pocket". But my eyes are so aching that I cant do it. I just wait eyes open to the drop falling inside. Am I doing it right ? I dont want to miss that treatment. Thanks.

[drz]

Thanks drz for sharing your experience and wisdom.
Do you have any advice how to avoid that scar tissue or is it part of the cataract surgery anyway ?
I didnt know that the pred can also lead to dry eyes...

Scar tissue after cataract surgery some times happens. It only happened to one of my eyes. I see two different ophthalmologists for eye care. One local and other a hour drive away. The local one did the cataract surgery and first removal of scar tissue. He tends to be very cautious but doesn't talk much and procedures done in his office seem to take a lot longer. But it is more convenient to have surgery done locally. I like the woman ophthalmologist an hour away because she seems to have a better "bedside manner" and seems a little more efficient and has more modern equipment and better office staff. She recently removed the scar tissue that grew back around the edges or maybe what was missed in first procedure since I don't think they were dilated during the first removal. The woman ophthalmologist said it is pretty common. The local male ophthalmologist said it is pretty rare. So I don't know how often it happens but removal is rather quick and mostly painless but it did create a lot of floaters that are distracting but she said they should eventually decrease or go away.

My dry eyes presented as excessive watering and tearing of the eyes. I complained about this symptom to my eye doctors and was told my eyes were too dry so they were making excess tears to try keep them more moist. Using a good eye drop like Refresh or a eye drop like Restasis to try increase moisture helped me with this problem. I also have a very slow blinking rate that causes eyes to be more dry. For some reason I don't blink as often as normal. I wonder if it has anything to do with being in the intubation coma for a couple weeks or maybe being a possible side effect of cataract surgery or maybe the eye drops I take for glaucoma. The dry eyes got better as my pred dosage went down too. It was much more prevalent during the high pred dosages.

[Middlesista]

Thank you my friends for your kind words and for being here with me. I love you.
Today I feel a bit better, about 8-9 on the scale of agony which was 10 yesterday before starting the drops. Eyes still red, aching etc. Joints also feeling stiffed. Feeling like the tin woodman from the wisard of Oz, without oil.

Technical question: its written in the drops papers that I should pull the lower eyelid and put the drop in the "pocket". But my eyes are so aching that I cant do it. I just wait eyes open to the drop falling inside. Am I doing it right ? I dont want to miss that treatment. Thanks.

Should try to get into pocket although drop should make it to the lowest point if it is not wiped away or falls out of eye some might get into the lower lid but best to try to get into inside of lower lid. If you pull down a little below your eye the lid should pull open just a bit and that might be less uncomf for you

[Alysia]

My dry eyes presented as excessive watering and tearing of the eyes. I complained about this symptom to my eye doctors and was told my eyes were too dry so they were making excess tears to try keep them more moist. Using a good eye drop like Refresh or a eye drop like Restasis to try increase moisture helped me with this problem. I also have a very slow blinking rate that causes eyes to be more dry. For some reason I don't blink as often as normal. I wonder if it has anything to do with being in the intubation coma for a couple weeks or maybe being a possible side effect of cataract surgery or maybe the eye drops I take for glaucoma. The dry eyes got better as my pred dosage went down too. It was much more prevalent during the high pred dosages.

Thank you drz. Then it seems there might be a scar tissue anyway.

As for the manifestation of your dry eyes: Michelle, is it like yours ? I just want to help you with yours so maybe we can ?

8 in the scale of agony today but with pain killers. I couldnt bear anymore. Not sure the eyes are getting better. Maybe because I put the drops not in the "pocket" ?? Trying now to do it like that. Although its harder.

Thanks, my friends, for being here. I love you. God bless you ♡

[Alysia]

I called the eye dr. to ask about how to use the drops and I told her that the agony is still big. She said it doesnt matter how I put in the drop as long as all of it is getting into the eye.
5 min later she called me and said: forgot to tell you that you need to shake the bottle before use.
So I bought a new bottle, assuming that the first might not contain correct balance in the ingredients after I used it without shaking. The pharmacist said that the med is less effective if you dont shake well before use. So maybe this is why I still feel aweful in my eyes.
P.s. remembered Phil in the hospital, when I brought him warm sterile water for his water pike and he used to say: shake it, baby.
Yes. Shake it, baby.