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Thread: 1000mg or 2000mg rtx ?

  1. #11
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    Default Re: 1000mg or 2000mg rtx ?

    I got a 1000mg infusion today. Dr VillaForte told me that in six months, she might reduce it further to 500mg. I had a 1000 infusion six months ago and prior to that, I was getting twin infusions (1000 two weeks apart).
    I feel better than I felt I years. I’m working two-three days a week, serving on civic committees, flying model airplanes, driving rc trucks and playing music regularly.

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  3. #12
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    Default Re: 1000mg or 2000mg rtx ?

    I did try Ivig many years ago before there was Rituxan. It helped. It is something that I may be doing again but there is no plan for that yet.

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  5. #13
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    Default Re: 1000mg or 2000mg rtx ?

    Alysia,
    Thank you for the clear explanation. Wegs is so confusing. My Duke doctor runs a boatload of tests on me. Probably, if I went back and looked Iíd find it. Sometimes I just have burn out.
    Right now I am having a lot of leg pain. Itís not so bad that I canít walk, just feels aching and burning. I will be seeing the doc shortly, and it is time for my infusions.
    Oddly, I am not having sinus mucus, but on very hot sunny days I am getting sinus headaches.
    i know a lady who has advanced MS and hot days are her worst. When I think of her I feel really blessed, she falls frequently and needs a walker. She is considerably younger than I. Her prognosis is bad, next it will be wheel chair, then loss of speech. I blame it all on Adam and Eveó they had to eat that darn apple!
    Masha

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  7. #14
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    Default Re: 1000mg or 2000mg rtx ?

    Alysia,

    My treatment was originally 2x 1000mg doses with them being one week apart. My last two infusions have been 4x 1000mg infusions one week apart. I am also a 6'6" tall guy and about 300lbs. That tends to hold me well, but once we get within about a month of my next infusion I feel the symptoms creeping back in.

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  9. #15
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    Default Re: 1000mg or 2000mg rtx ?

    I am scheduled for my 2nd Rtx infusion. It has been almost 6 months. I am really starting to not feel well, my eyes hurt, tired, joint pain, headaches, etc. It takes a while for RTX to kick in for me so I feel like I have only really had 1 solid month of feeling good (July) I am scheduled for once per week for 4 weeks, same as the last time. I am on 12.5 pred. My labs seem good except igg low, mcv low, but I feel like the labs should be worse! I am wondering if I should also be on a immune suppressor... My Dr is sending me to Allergy to see about IV for low IGG after the RTX.
    I am glad you made this post because I was just wondering what other people were doing. Keep us posted.

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  11. #16
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    Default Re: 1000mg or 2000mg rtx ?

    Quote Originally Posted by Mattieus View Post
    Alysia,

    My treatment was originally 2x 1000mg doses with them being one week apart. My last two infusions have been 4x 1000mg infusions one week apart. I am also a 6'6" tall guy and about 300lbs. That tends to hold me well, but once we get within about a month of my next infusion I feel the symptoms creeping back in.
    I used to get the symptoms coming back also about a month before the next infusion. That was when I was on 2000mg. Now on the 1000mg the symptoms have started much earlier. I had only 2 and half quiet months or so this time. Some weggies get their infusion every 4 months but I dont know what dose do they get.
    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.

  12. #17
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    Default Re: 1000mg or 2000mg rtx ?

    Quote Originally Posted by tac View Post
    I am scheduled for my 2nd Rtx infusion. It has been almost 6 months. I am really starting to not feel well, my eyes hurt, tired, joint pain, headaches, etc. It takes a while for RTX to kick in for me so I feel like I have only really had 1 solid month of feeling good (July) I am scheduled for once per week for 4 weeks, same as the last time. I am on 12.5 pred. My labs seem good except igg low, mcv low, but I feel like the labs should be worse! I am wondering if I should also be on a immune suppressor... My Dr is sending me to Allergy to see about IV for low IGG after the RTX.
    I am glad you made this post because I was just wondering what other people were doing. Keep us posted.
    Thanks for sharing. I guess you will get rtx 500mg ◊ 4 times ?

    Many times the labs don't reflect how much the wg is active. Only in 2 flares I had a dramatic labs' results. Wg can also be smoldering and causing a damage while the labs looks ok.

    Please update us how it goes with rtx and then with the Ivig.
    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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  14. #18
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    Default Re: 1000mg or 2000mg rtx ?

    Thank you. My doctor told me I need to manage my symptoms better (which is probably true but not the answer) She says to wait it out until next week when I get the RTX and prednisone IV and see what happens... She also is suggesting to wait until after the RTX to start on Immurin. My concern is that it took about 2 months last time for RTX to kick in and I know the pills take about 6 weeks. I think she wants to see what is working and what maybe isnt...

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