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Thread: eyes involvement ?

  1. #51
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    Minor typo, above... Sorry... Deb...
    Live,love,and laugh...

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    Thank you so much for sharing your wisdom and experience, my friends. I feel blessed to have you here with me. I love you.
    Michelle, I feel your prayer like you are right here near me. Thank you ♡♡♡
    Deb, I am so glad for the good news about your pulmy and the option of an eye doc consulting with experts. Time to start your fight.
    Kirk, I never saw this alkalol or found it here. I read about it just now for the first time. But we used to use here camomile tea in the same way. Right now I am afraid to touch my eyes but thanks for sharing !
    Pete, I think you are right and it is the start of a flare. I will wait for the eye doc big check on thursday before taking more pred because I dont want the pred to mask whatever is going on there. I want to see how my eyes are. He will check me with pupils enlargment etc.
    Eyes are still red and aching all around. Still seeing floaties. The drops are still making an itchy feeling.
    Each flare looks different in some ways. No nose bleeding ! Maybe nothing was left from my nose to bleed... but I am tired like hell, slept 13 hours on Saterday. Still night sweats. Changing shirts in the middle of the night and getting back to sleep.
    I went for labs this morning. Already got some results. Hemoglobin which was good is suddenly under the normal. But not too far down. Dr. Phil used to say to look at it. I was out of remission and back to smoldering in November. So now its getting more serious...
    Its amazing how healthy I was when I was with my sweetie... I miss him..
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  3. #53
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    Deb, I'm glad to hear about the good new pulmy and hope that goes somewhere. As for the eyes, with the pain you are having, it sounds like you should have drops more similar to Alysias', with the antibiotic as well as the steroids. Alysia, it does indeed sound like a flare, and I hope your WG doc will make a decision soon about dealing with that. I hope the eyes improve soon so you can move on to other aspects of your flare. Much love to you!
    Anne, dx'ed April 2011

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    Alysia, I'm praying for you... I pray the rtx kicks in fast... Again give the drops time, and only as directed... Anne, hi... Anne the drops are the same, minus the antibiotic... It hasn't reached ice pick status, thank you Lord, and if it does like before? I will be at the er, faster than you can say Er!!! Ya, the eyes completely freak me out! Big time! So now you know my weak place! I have many actually, but the eyes is real big... Anne, its V day! Haha!!!... I thought of you, Anne! You guys rock... Deb... Xox...!!!...
    Live,love,and laugh...

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    Thanks Anne & Deb ♡♡♡
    Eyes still red & burning but the area around is less painful.
    Neutrophils came above the normal. No idea what it means.. indication for inflamation ??
    CRP came on the high border.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Alysia, good there's less pain... Give it time... Hopefully you'll be able to stop this before it turns into a flare, which is what it sounds like... Hopefully the rtx is in full effect by now... Take care of youreself sweetie... Deb...
    Live,love,and laugh...

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    @ Alysia "Eyes are still red and aching all around. Still seeing floaties. The drops are still making an itchy feeling." Episcleritis and then Scleritis lead to my diagnosis originally. It sound like your drops are similar to what mine were. I enquired about the floaties and the irritability and was told that the liquid is used to transport a powder onto the eye so it does feel a bit like really fine sand. It settles down as the powder dissolves. Luckily for me my opthamologist had seen it before and was right onto it. I got to the stage where it was extremely painful. My vision was distorted and it felt like letter openers being driven into the eyes. It can get out of shape really quickly if not treated. It sounds like you are onto it now at least.

  8. #58
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    Thanks for the explanation and info, Lucky.
    Its scary. I dont feel like becoming blind. And its a new organ involvement for me. Before now, it was only red eyes but no inflamation. I read a bit and saw that it can affect also the eyes in the orbit.

    I dont trust the eye doc but I hope he will check everything tomorow. I do trust my wg doc. He is one of the writers of this one:
    Refractory Wegener's granulomatosis: effect of rituximab on granulomatous bilateral orbital involvement. - PubMed - NCBI
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  9. #59
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    so, good news, the Episcleritis gone. Thanks God.

    I went yesterday to the eye doc. I was there almost 2 hours. he checked every thing he could. he checked for dry eye (sitting with pieces of something inside the eyes for 5 min... weired torture... I thought about my sweetie who got injections in his eyes and I tried to be brave.. ), enlargement of pupils, he checked the pressure of the eyes, he even numbed the left eye and attached a len and checked the inside of it 365 degrees. another torture.

    I feel much better then I did a week ago. but I still have red eyes (the white of the eye is with lots of red blood vessels appearing), eyes still burning, I cant read much for longer times and I still see floaties. he said that the floaties are something of getting older which I need to get used to. he said that the red and aching and burning eyes are because of dry eye. he said that the test of eye dryness shows zero tears. I told him: "I have so many tears, trust me". he said: "not when you cry".

    he gave me new drops. those:Dry Eye Drop Symptom relief product information at Systane.com

    the drops feels nice. like pouring oil into the eyes. but the blood vessels are still there.
    Michelle, maybe it can help you with your red eyes ?

    he said that the episcleritis was "light" one. he continued to insist and said that it is not wg related although I told him that my wg doc said that it is. he said: "I am almost 70 years old and I never heard about wegener, only from you, I dont know anything about it, and I never saw anyone with it, but you. I look at what is common. not at what is not. so I dont think that it was wg related". (how could he say so when he also said that he know nothing about wg ?)
    but he was caring enough to check whatever he could. he even said that if I am afraid that the orbit of the eye can be with wg I should ask my wg doc for CT.
    when I asked if the dry eye can be wg related he said no.

    actually my eyes started to feel like that already in October and when I went then for a check he said that this is because of dry eyes. I read somewhere in Hebrew, that dry eye can be related to an auto immune disease. my eyes started to be red etc around the time that I was out of remmision.

    so I wonder if dry eyes is an indication to wg activity, if it is wg related or not.
    anyone knows ?

    my PR3 came back. still positive but few points less then it was in December. so I hope that the rtx that I got on January is working already. I still need to consult with my wg doc to see if I will get another rtx now of not, but it seems that I can still use my eyes, so no stress now. Thanks God, and my sweet dr. Phil who is my guardian angel.
    Last edited by Alysia; 02-19-2016 at 10:34 PM.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  10. #60
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    Great news, lovely

    Mine are definitely not dry eyes because I have to wipe them from running/tearing, all day.
    Mine were diagnosed as Scleritis and uveitis, prior to a WG diagnosis. My doctor said it was part of my RA diagnosis.
    They cleared up not long after I started on pred and MTX

    Now they go bright red, and hurt with light, if I eat something that no longer agrees with me. For example, I can't eat anything that has citrus in it, or is acidic
    If I eat a pre packaged, shop bought or restaurant meal, and it has citrus etc in it, then my eyes go red within about 20 minutes and itch like crazy. Thankfully it now clears up within a few hours or by the next day.

    I'm hoping that the RTX is keeping your eyes from getting worse, and it's good news that your PR3 is coming day.
    You will be back in remission in no time
    Thank you Dr Phil, for looking after our girl
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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