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Thread: eyes involvement ?

  1. #111
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    Quote Originally Posted by Pete View Post
    Alysia, with your symptoms, it seems you're definitely flaring. See your wegs doc ASAP!!
    Thanks Pete. I just sent him an email. Also talked on the phone with the eye dr. She said to go back to 3 drops a day until Sunday. Then to call her and come for a check. She said rtx should be the next step.
    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.

  2. #112
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    Alysia, I agree with Pete. I have wegs and this sounds like a flare, but as I mentioned in my email, you're eyes should be improving slowly, but not healed this fast. Please wait and dont just up the pred, this is a bandaid approach, and pred is not something to be taken lightly, and I know you know this, just saying for the lurkers, ect... Alysia, the itching has me concerned, as this can be a kidney symptom, so please mention it to the doctor! Some of these sound kidney, so please ask for blood work... Do you have chills? Any fever? In my opinion only, i would ask about an additional half treatment, of rtx. Without increasing pred, just my opinion... Do they do half treatments, if you're to soon for the next, but not getting control from the last? Alysia, I pray for you... I know you will keep us all updated... I hope you feel better! Deb...
    Last edited by vdub; 03-11-2016 at 09:11 AM.
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  3. #113
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    Vdub! Hi can you please fix this above post!!! Yikes! have wegeners! Please, if you can! Maybe add a note under? Please! TDhank you...debra...



    Done!
    Last edited by vdub; 03-11-2016 at 09:11 AM.
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  4. #114
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    I agree with Pete. Does your doc know you are having these symptoms? It does seem early for another RTX, unless, as you imply, the dose may have been too small. Then, again, April is not that far off, so getting another one now would not be that early, depending on when in January you got the current one. Not that I know anything about RTX! If you are really flaring, you should see your doc, and maybe he'll just up your prednisone. I wouldn't worry about it masking anything if you really need some quick treatment. Then maybe he'd give you the bigger dose of RTX in April. Good luck, and I'm sure you will let us know what happens!
    Anne, dx'ed April 2011

  5. #115
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    My wg dr. Didnt answer my email yet. I hope he is ok. Usually he does very fast. Feeling sick here. Coughing. Nose aching. Crazy diarhea. Tired etc. No chills or fever, Deb.
    Rtx is either 1000mg for maintenance or 2000mg for treatment in active wg. Other gets another meds for maintenance, but mtx didnt work for me & I couldnt bear Imuran.
    Pred saved my life. So I have a deep emotional friendship with it.
    It was scary yesterday on the 2 drops a day: eyes felt so aching that I couldnt move them to the sides. Weired to explain. It was aching in the white area (which is full of blood vessells now) near the outside corners so I was looking just forward and switching all my head to the sides. After back to 3 drops a day, eyes less painful. I can look to the sides but the memory of yesterday's pains, keeps me careful. Does anyone had that ?

    P.s. just remembered dear Barbara's saying: keep looking straight forward, between the ears.
    Last edited by Alysia; 03-12-2016 at 03:48 AM.
    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.

  6. #116
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    Love, this definitely sounds like a flare and you need more RTX.
    Maybe your specialist is waiting for a response from the UK, so he hasn't responded to you yet, because he is unsure.

    We used to tell Phil all the time to increase his pred.
    Please don't think that pred will mask your symptoms. Pred is needed to get your symptoms back under control.
    Masking symptoms is not an issue, what is the issue is that you are in pain, and our friend pred, will help.......NOW
    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

  7. #117
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    Alysia, yes i had this pain with my case, also the broken blood vessels, ect. Pain was so unbearable that the emergency eye doc, gave me chemo, in my eyes, then gave me the drops, which says alot, cause they ate not a perscription, only for doctors use... Want to let others know here, to please question a doctor that gives eye drops that have antibiotic in them... Did he culture anything??? I say this because these antibiotics put directly in the eye, will kill off the protective bacteria the eyes contain, then may go on to cause an inflammatory response, because you no longer have this protection! This bacteria, protects you from inflamation so please be careful, and make sure you have an infection, and not a wegeners scleritis eye flare... I dont like throwing antibiotics at things, as this is very seriouse, and doctors are famouse for this! Question everything! In turn, youre recovery will be that much further off. Not just the eyes, but anything... Again, question everything. A white coat, does not mean they are God... In fact many should leave the coat at home... Debra...
    Live,love,and laugh...

  8. #118
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    Alysia - I saw eye doc for eye pain just the day and she had me increase prednisone by 10mg and the RA who is covering for my RA agreed. Not sure if you heard from your doc yet but the treatment, as you well know, will help as soon as you start. Did you increase your Prednisone?

    Thinking of of you and sending healing thoughts across the many miles.

  9. #119
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    Quote Originally Posted by Alysia View Post

    Michelle, make sure that the refresh drops came in ampules of 24 hours use only. Not in a bottle. My new dr. Explained that the bottle contains perservatives which are bad for us.
    I haven't been on the sight for a few days, been having other issues. But I read this and I wondered what ampules are ? I am asking because I just went to my ophthalmologist and she told me to get Refresh optive Gel Drops for my dry eyes., and it comes in a small bottle. With all the ingredients I don't know if it has preservatives or not ??? But I haven't had any issues, then again I am not using them as often as she said too...go figure !!!!

    Has your Dr. gotten back with you, did you up your pred ? Hope you are feeling better and get the rtx sooner. Hugs
    Life isn't about how you survive the storm, but how to dance in the rain !

  10. #120
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    Deb, the ampules are well, small ampules that are for single use, keeps it more sanitary, ect. Prevents coming in contact with air, as well as what may come in contact with the eye... Someone said, maybe alysia, that theres less preservatives in the ampules, mine however are the same ingredients, just single use for more precise sanitary purpose... Debra...
    Live,love,and laugh...

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