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Thread: Hello my name is rudder and I have had GPA since 1991.

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    Default Hello my name is rudder and I have had GPA since 1991.

    I have not been on a forum like this for a long-time. My disease has been controlled with Methotrexate since 2001 and I feel very lucky.

    I had the standard treatments in 1991 with oral Cytoxan and Predisone for 2 years or so but had a flare after that and took Cytoxan intervieniously for +2 years monthly at first and then every other month after that with some Predisone as well. In 2001 I had a major flare and was put on Methotrexate and have been taking 7 - 2.5 tablets every since, once a week.

    I do have some chronic kidney issues and controlled high blood pressure but not bad, so my life has been good. I am back on this forum because the Methotrexate has caused me to become anemic and my Doctors are thinking about changing my meds to Rituximab and I wondered if anybody on the forum has taken that drug and what the results have.

    My Doctors have lowered my Methotrexate dose to 6 - 2.5 tablets per week. I am going to have another option with a different Doctor in a few weeks so I will now more then.

    So if anyone knows someone who has/or is taking Rituximab for GPA; I would appreciate any information regarding the drug.

    Thanks, rudder.

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    Welcome rudder. I was diagnosed last year and treated successfully with Rituximab and prednisone. I did not have kidney involvement, but there are others on this forum who did and are being treated with Rituximab. I'm sure they will respond to you. You can also look at the forum on "medication" where you will find much discussion about Rituximab.

    Glad to have one more long-time survivor on board!

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    Welcome aboard, Rudder!

    You'll find a lot of folks on here to share the "wegs experience".

    I was diagnosed a little over four years ago. I had a pretty bad flare about 14 months later. Since then, life has gotten progressively better - to the point where I'm able to live my pre-wegs lifestyle.

    I had two infusions of rituxin late in '13. Both were nonevents. I had very mild fatigue the day after, but nothing that interfered with my normal activities. I've been on methotrexate for almost three years. I talked to my rheumatologist today about getting off it. She suggested that I remain on it indefinitely as her research indicates a 40% chance of a flare within a year if I come off it. I take 15 mg/wk (the minimum effective dose) and am a bit fatigued for about 36 hours afterward.

    For now, Rituxin is the "big gun" to keep in reserve in case I need it.

    Keep in touch!
    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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    I receive Rituxan once a week for 4 weeks every 6 months at the Mayo Clinic in Jacksonville. Rituxan by itself did not do the trick for me. It was only lasting for 3 months or so. I started taking methotrexate to hold me over between infusions. I am not happy with the methotrexate though. I experience a good deal of fatigue and muscle weakness when taking it. I am switching to Leflunomide this week. We will see how it goes...

    My experience with the Rituxan infusions are good however. I just wish it lasted longer. I take benadryl by injection which puts me down for a few hours. Then they push the methyl prednisone which gives you a good boost. By the time I'm done getting my infusion I'm ready to go and on the move. It is usually a productive weekend for getting things done around the house. The boost in energy is clearly from the prednisone but I try to make good use of the energy because I know it won't last.

    Good luck with your treatment!

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    I haven't taken RTX, Rudder, but just wanted to say welcome to the forum. I know the med has been highly effective for many on here who have taken it, and not so much for others. I'm sure you'll find a lot of discussion of it if you do a search on here. It's been talked about a lot. I hope you'll continue to join in discussions here!
    Anne, dx'ed April 2011

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    I have received RTX rounds 6 times. I am a hard nut to crack, so they had me on Cellcept also. It seems to be very individual about the out come, most people have had great success with it. Welcome to the forum and I wish you all the best.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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    Hi, welcome! Our daughter had it at age 14 and again at age 16. It helps her a lot. She has other meds too, but Rtx is the most effective one. If it helps, I chat onfb with someone who started taking it before it was FDA approved and it has helped him tremendously.

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    I was diagnosed in 2013. I had pneumonia and kidney involvement and was first treated with the usual high dose prednisone etc. I did 4 IV doses of the Rituximab in May. It took about 6 hours for each one as they start you slow to make sure no problems. It did the trick and I had no major side effects from them. Prednisone side effects were nasty. I did get off of everything in December. Was doing fine. February this year I had another dose of Rituximab due to a slight elevation in white count. Not sure I really needed it or not but no side effects from it either. So I am only doing the Rituximab as my drug of choice if needed. I do labs every 3 months. I feel good but do have a whole lot of what I call "arthritis" pains. I have had spots of it for years, just more of them now. I consider myself very lucky to have caught it early and to have found a really good Dr. I hate taking pills so the Rituximab really works for me. Good luck!

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    Welcome to the forum rudder.
    I was diagnosed a year ago this month and was put on 60 mg prednisone until the rituxan treatments were approved by the insurance company. I have kidney involvement and immediately after the 4 weekly rituxan infusions my kidney function improved. However as soon as we tapered the pred to nothing I began to flare. We did another 4 weekly infusions of rituxin in October and I am doing good now. We tapered the pred again following the Oct infusions and I have been off pred since
    February. It's now 6 months since the last rtx treatment and so far no flare. I see the dr on Monday and hope to find out what his plan is for continued treatment. Good luck. Rtx certainly helped me.
    Karen; dx'ed April 2014

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    What dr. do you go to and where... thanks Susie

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