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Thread: eyes involvement ?

  1. #121
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    Hi Deb.
    These are a picture of the ampules. They are individual droppers so that you don't waste any if you don't us it all in time.

    ampules.jpg
    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

  2. #122
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    Quote Originally Posted by debra View Post
    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...
    Without increasing pred, just my opinion...
    Deb. in 2008 I was dying in a hospital. lungs all inflamed. after 6 weeks of "atypical pneumonia" and many antibiotics which did nothing. docs didn't have a clue what it was. then they tried pred. 30mg. first time in weeks that my fever was gone. then it was back at night. so they gave me 60mg pred. it saved my life.
    later, when I had ears inflammations, fluids in the ears and hearing loss, they gave me pred but too little. on my own I took more until the ears were clear. pred saved my hearing. later, when my joints were red, swollen, aching - pred helped me again (this time my rheumy ordered it). Then when I had crazy diarhea, again taking pred on my own, it calmed my colon (later when I found a gastro dr. he said that I did it right). I couldn't go to work while running all day to the toilet.
    if it was not the pred, I would be today dead, deaf, lame and unemployed. now, I don't want to be blind. so I trust my dear pred on that as well.
    no other choice for me and for many others of us.
    Last edited by Alysia; 03-14-2016 at 02:57 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.

  3. #123
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    Quote Originally Posted by mishb View Post
    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
    Thanks Michelle and middle sister. I am dying to take my dear pred but I can't yet from few reasons: if my wg dr. will insist on waiting to see if the rtx from January will work, I will not know if I feel better because of rtx or pred and then will not know if I need more rtx and how much. second, I want to do labs before and go to the check of the eye dr. before. I hope I can do it all soon.
    my wg dr. didnt answer me yet, but I checked with his secretary and he got my email.

    Deb. I forgot to say in the above post about pred: Phil was much better when he was constantly on pred. once his good wg doc left town and he got a new so-so dr. who ordered him to be off pred, he only got worse over time. my stubborn sweetie.... how many times Michelle and I tried to convince him to take pred.....
    Last edited by Alysia; 03-14-2016 at 02:57 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.

  4. #124
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    Quote Originally Posted by Debra C View Post
    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 !!!!
    The drops are in ampules like in the pic that Michelle posted above. I searched for a link but couldn't find one for mine so I will write here what is written on the cover: company: Allergan, Ireland. REFRESH: polyvinyl alcohol 1.4%, povidone 0.6%, eye drops for dry eyes, perservative free. 30 single use containers X 0.4 ml, sterile.

    make sure that it is perservative free.
    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.

  5. #125
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    just got a phone call from my wg dr. and I understood why it took him so long. he said that we might have a problem with the health service asking for rtx after only 2 months. he said that if we say that the illness is active, they might refuse to give me rtx again, and will say that it is not working well. he wanted me to wait more month or two. I said that I can't. and that I deserve to get rtx according to the law (there is a list of illnesses to which one deserve to get each expensive med. for rtx there is wg. I guess they thought that no body have it). I said that I only got half treatment (1000mg) and that I deserve to get the other half. so he said that he will try to write the right letter to the health service but he is afraid that we might loose it all. I insisted on doing it. so we will see......
    its all about money, here as well. and I pay to the health service and national insurance so much every month.... this world is a shame.
    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. #126
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    Quote Originally Posted by Alysia View Post
    Thanks Michelle and middle sister. I am dying to take my dear pred but I can't yet from few reasons: if my wg dr. will insist on waiting to see if the rtx from January will work, I will not know if I feel better because of rtx or pred and then will not know if I need more rtx and how much. second, I want to do labs before and go to the check of the eye dr. before. I hope I can do it all soon.
    my wg dr. didnt answer me yet, but I checked with his secretary and he got my email.

    Deb. I forgot to say in the above post about pred: Phil was much better when he was constantly on pred. once his good wg doc left town and he got a new so-so dr. who ordered him to be off pred, he only got worse over time. my stubborn sweetie.... how many times Michelle and I tried to convince him to take pred.....
    I would not have taken the xtra prednisone if the two docs I talked to had not told me too. I so want to get off prednisone but I know there are times when it is needed. I will talk to my RA tomorrow and see what he says

    it is true what you said Alysia about differentiating between the xtra prednisone and Rituxin as to what is helping.

    I hope your doc says what he has to in the letter - and I wish the USA had such a law about medication that is life saving. We have insurance companies that rule our medical treatment

    Are you able to take xtra prednisone or does your doc still feel you bed to wait?
    Last edited by Middlesista; 03-14-2016 at 03:43 AM.

  7. #127
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    Alysia - I know you were discussing another Rituxin dose - did your doc run the blood work to see if your B cells are still suppressed?

  8. #128
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    Alysia, I got a newsletter from the VF place today and they mentioned eye involvement could be caused by gut issues ( which I know you have also ) I'm sorry I didn't get a chance to read the whole article but I will tomorrow and let you know what they say. Maybe there is more than just your eyes since you said you had been sick also. will let you know tomorrow about the article,it may be nothing or something ???
    Life isn't about how you survive the storm, but how to dance in the rain !

  9. #129
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    Deb, its more than likely because eighty percent of our immune system is in the gut. Before I go on, no I'm not a doctor and I'm grateful, and its my area of study for many years. Also since I can't post links, you all know to google it, and reach you're own conclution... Because our immunity is in the gut, and the reason being because this is were our beneficial bacteria is stored, any immune response will be triggered when this micro flora is interrupted... Since this bacteria is throughout our bodies it protects us. Eyes and tears have this, our skin being the largest organ for absorption, our mouths, ect, ect. When disrupted say for example a round of antibiotics, if this flora isn't replaced, changes in the flora balance create an inflammatory response, having the ability to even change the genetic ode of the cells, thus creating the Inflamation needed to trigger an autoimmune response... This flora is stored in the gut, colon, ect, but is throughout the body... This beneficial bacteria, is so unbeleivably important, that yes our lives depend on it... The food supply, now having antibiotics in the meats ect, if you're not eating organic, this alone can and will wipe out the microflora... This bacteria is what digests food, so you can see it is life itself... Once unbalanced, the bad bacteria takes over and infections will multiply as well as yeast and fungus, and autoimmune reactions due to increase of Inflamation... Alysias doctor prescribed an eye treatment with antibiotic. My questions are these, what exactly did he culture? This in my opinion only, was wrong and doctors due this all the time... Get a culture before saying yes to even a skin lotion! Then once its proven through the cuture go from there... Pred drops with soothing ingredients would have been more beneficial in Alysias case, my opinion only.... People please, think about probiotics, and take what you're doctor says here with less than half a grain of salt, why??? Because most doctors know nothing about this area! Hope someone finds this helpful, cause now I'm exhausted! Doesn't take much... Debra...
    Live,love,and laugh...

  10. #130
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    Thanks Deb & Deb for the input. my gut is sick almost all my life. although this time the eyes started to flare before. the only thing that calm my colon is pred, rtx and very strict diet (actually eating nothing feels the best but I cant do it).
    as for the eye drops with antibiotics, I asked my eye dr. yesterday and she said that I dont need to worry about that.
    on the other hand I suspect that the crazy diarhea that I have (totally crazy in the last days) might not be wg alone, but a reaction to bactrim. although I didnt have that in the past. so I will try few days without it to check it.
    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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