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Thread: Rituximab V Azathiioprine (Imuran) advise

  1. #11
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    Default Re: Rituximab V Azathiioprine (Imuran) advise

    Thanks, I am going to try the banana too. Like many of you I am anemic. I can’t take iron pills because of liver and stomach. Any suggestions. Can’t take B because of folic acid.
    Thanks,
    Masha

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  3. #12
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    Default Re: Rituximab V Azathiioprine (Imuran) advise

    Alysia, You gave me food for thought. No change in medicine or activities. Then I had my AHA moment. I got a pneumonia shot. The pharmacist said that I may possibly have a reaction since I get the Rituxan infusions. I think that set it off. Doctor said I should have pneumonia and flu shot. The flu shot will be available at the end of August and I am scheduled for infusion in mid September. Hope it doesn’t start another flare, but the risk of getting the flu is dangerous for me. Thanks for helping me think about it. How is your vision?
    Masha

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  5. #13
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    Default Re: Rituximab V Azathiioprine (Imuran) advise

    Quote Originally Posted by Masha View Post
    Thanks, I am going to try the banana too. Like many of you I am anemic. I can’t take iron pills because of liver and stomach. Any suggestions. Can’t take B because of folic acid.
    Thanks,
    Masha
    Some iron rich foods include green, leafy vegetables such as spinach. You can also eat beans, cashews, breakfast cereals that are fortified with iron, whole grain bread, turkey, ham, red meat, liver, shellfish such as clams, mussels and oysters. Many of these foods also contain folic acid. In short, eat a balanced diet of real food and appropriate portions, and avoid processed foods and sweet drinks that have sugar, high fructose corn syrup, or artificial sweeteners in them.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Default Re: Rituximab V Azathiioprine (Imuran) advise

    Thanks, I am doing some and I will add the others. Mom used to give me liver on a monthly basis when I was a teen. Not crazy about it but husband loves it- I’ll do it.
    I remember you mentioning your doctors told you to get vaccines before treatment. I got the first half of Shindrix. Due for flu. They say wait six months since last infusion. The closest I can pull it is 5 1/2 months after, that will make me 2 weeks before next infusions. Doctors say to get vaccines. Your thoughts? Thanks. Masha

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    Default Re: Rituximab V Azathiioprine (Imuran) advise

    I get a single dose of rtx annually — usually between mid-September and mid-November. I get my flu shot in September. I got the shingrix shots this past spring. As my rtx treatment is not much of a scheduling issue, I have no guidance on vaccine scheduling. Don’t know who “they” are, but I’d take my guidance from my docs, assuming they know your whole medical situation and you have confidence in them.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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  11. #16
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    Default Re: Rituximab V Azathiioprine (Imuran) advise

    ‘They’ are the articles I read on the Net ie, Johns Hopkins, Mayo, etc. Pro to get non live vaccines. I am going to follow my doctors advice. I don’t think 2 weeks should make that great of a difference. Doctors didn’t either. Want to fit a vacation into this scheduling too. Life must go on.
    I really appreciate your guidance , Pete. Some of my questions are so minor to what you and others have faced. I just don’t want to create a problem where there isn’t any. Shopping for liver and shell fish tomorrow.
    Did you hear Naples to Sarasota beaches have been overloaded with dead fish? Worst ever.
    The greatest wealth is your health.
    Masha

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    Default Re: Rituximab V Azathiioprine (Imuran) advise

    Quote Originally Posted by Masha View Post
    Thanks, I am doing some and I will add the others. Mom used to give me liver on a monthly basis when I was a teen. Not crazy about it but husband loves it- I’ll do it.
    I remember you mentioning your doctors told you to get vaccines before treatment. I got the first half of Shindrix. Due for flu. They say wait six months since last infusion. The closest I can pull it is 5 1/2 months after, that will make me 2 weeks before next infusions. Doctors say to get vaccines. Your thoughts? Thanks. Masha
    @Masha, not sure you saw, I tagged you on a post here

    https://www.wegeners-granulomatosis....vaccines/page3
    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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    Default Re: Rituximab V Azathiioprine (Imuran) advise

    Quote Originally Posted by Masha View Post
    Hi Ben, sorry to hear yíall had to go in the hospital. But very smart, this disease moves like grease lightening. We donít know where, when or how it will strike. So diligence is the name of the game.
    Two weeks ago I saw my Rheumatologist, just for tests. I was feeling kind of punk, but nothing specific. The next day yellow sinus mucus. As we all do, I tried to tell myself it was just a cold, the following day the leg pain set in. No more denial, it was a flare. There I was Ďriding along in my pink Cadillací. No I donít have a pink Cadillac, but my way of saying I was hoping I was in remission. But due to the advice of all the people on this site I didnít hesitate. On the phone with my ENT, on antibiotics and increased the Prednisone to 40. Hope I am on the mend. Not surprising, but when the tests came back from Rheumatologist my numbers were up, nothing extraordinary. C-ANCA was 1.8, where I started from. Frustrating.
    About your pains. I donít know. Before I was diagnosed, the bottom of my feet were very itchy. My mother used to say, itchy palms mean you are coming into money. Not so lucky, itchy feet meant I was coming into Wegeners. Now my right foot occasionally feels kind of fuzzy on the bottom. But nothing like what you are going through.
    Hope your new medicine works.
    Masha
    Sorry to hear about the flare up. My son is so good at this denial stuff. He lives by it, until he can't any longer. Like today.

    Sent from my SM-G920V using Tapatalk

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    Default Re: Rituximab V Azathiioprine (Imuran) advise

    Hay guys, these things never go away very fast any more...

    Getting used to the time it takes to get on the better side if good and still fighting my way back.

    I am getting better, flair signs are still slowly reducing, but the cramp is getting worse. Around mid afternoon I am starting to get it, a similar time that my legs start to go during a flair and it continues on and off till I sleep late evening. You know when things start to link and have patterns, it seems like the timing of the cramps are bang on as to when the arthritis pains normaly start.. they have started me on Quinine Sulfate to see if that helps but 2 weeks in and not any change.

    On a positive note my doctors and specialists have now agreed to keep me on rituximab 2x every 4 months and start me on methotrexate in a couple of weeks time once back from holliday. They have offered self injection if I suffer with to many side affects or look at some alternative drugs.

    I just have to shake this double lung infection and get ride of this soar throat and I will be right as rain ....

    Oh the Weggie just keeps giving...



    Again thanks so much for all the input, truly is the best forum :-)

    Thanks peeps and stay strong

    Ben xx

    Sent from my SM-G930F using Tapatalk
    Ben


    Diagnosed in 2013


    Never, never, never give up! (Winston Churchill)

    What screws us up the most in life is the picture in our head of how it is supposed to be.... (Not found out yet)

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    Default Re: Rituximab V Azathiioprine (Imuran) advise

    Quote Originally Posted by BenHornsby View Post
    Hay guys, these things never go away very fast any more...

    Getting used to the time it takes to get on the better side if good and still fighting my way back.

    I am getting better, flair signs are still slowly reducing, but the cramp is getting worse. Around mid afternoon I am starting to get it, a similar time that my legs start to go during a flair and it continues on and off till I sleep late evening. You know when things start to link and have patterns, it seems like the timing of the cramps are bang on as to when the arthritis pains normaly start.. they have started me on Quinine Sulfate to see if that helps but 2 weeks in and not any change.

    On a positive note my doctors and specialists have now agreed to keep me on rituximab 2x every 4 months and start me on methotrexate in a couple of weeks time once back from holliday. They have offered self injection if I suffer with to many side affects or look at some alternative drugs.

    I just have to shake this double lung infection and get ride of this soar throat and I will be right as rain ....

    Oh the Weggie just keeps giving...



    Again thanks so much for all the input, truly is the best forum :-)

    Thanks peeps and stay strong

    Ben xx

    Sent from my SM-G930F using Tapatalk
    This quote sure fits for GPA, doesn't it?
    Never, never, never give up! (Winston Churchill)
    Knowledge is power! Wisdom is using it to make good decisions!

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