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Thread: Thinking about Rituxan

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    Default Thinking about Rituxan

    18 months ago I was diagnosed after a second sinus surgery and the pathology noted "granulomas" and I was sent for bloodtest and it came back as Pr3 high as well as C Anca titer 1:40 (High). I had night sweats, joint pain, bloody nose, crusting, ear pain etc. My ENT sent me to a Rheumy and I started on Pred. & Methotrexate. 10 months in I switched to Imuran 175 mg. 9 months have gone by and I still don't feel back to normal. I still have swelling in my eyes and inflammation in my sinuses and feel really tired some days. I have moved down to 9mg of prednisone daily and if I move down anymore I get more blood in my daily sinus rinses. I have bloodwork done monthly and no issues with lungs or kidneys and my bloodwork is stable. I guess my question is" Has anyone ever went to Rituxan without having kidney or lung involvement?" My rheumy keeps looking for some hard data but I have kept up with this site religiously and I don't feel like I'm in remission at this point. He is willing to let me take it next month, but I just wanted to see if anyone else has ever taken it with no lung or kidney involvement? Thanks, This site has kept me informed over the past 18 months.

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    When I was initially dx'd I had ear, sinus and lung involvement . By the time I was put on Rituxan I only had ear and sinus involvement. Rituxan has been an amazing drug. It took from Dec 2012 till my last dose Jan 2014, but my new rheumy said that my labs were good and I heard the words.... " drug induced remission,"for the first time since Dx's.
    Best of luck to you on starting Rituxan .
    Last edited by Jaypfei; 08-04-2014 at 09:40 AM.

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    I don't know what the full criteria is for a doctor choosing Rituxan but I can answer your question " Has anyone ever went to Rituxan without having kidney or lung involvement?" -- Yes, I have had several infusions of Rituxan and I have no kidney or lung involvement. I have other problems- but not those two. (Central Nervous system, tracheal stenosis- dilated three times, eye involvement, small strokes, etc)

    It sounds like you have symptoms enough to warrant trying Rituxan. Your physician sounds a bit unsure of treatment thus leaving the choice up to you. If it were me I would have the doctor consult with one of the fantastic doctors available for consultation through the Vasculitus Foundation. They are all very good , I went to see Dr Langford in Cleveland when I felt my doctors were not entirely on top of things.
    It was a great choice for me.

    I have a different Rheumy now that I think is more on top of things. If I were in doubt I would have him consult with Cleveland Clinic- just talking with any of the good docs there would be ok with me.

    And congrats Jaypfei. That is just fantastic news.

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    I dont have kidney's involvment, thanks God. my lung involvment was mostly in the acute onset, and after that what's left is dry coughing and some SOB. but I did got rtx because of deteriorating state of my nose, ears, joints, red eyes and colon. only after the rtx, for the first time, my c-anca and pr-3 became negative after years of only positive. please see this: http://www.wegeners-granulomatosis.c...s-my-list.html
    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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    Thanks for the info. I will start Rituxan in a couple of weeks. My rheumy is always looking for some hard data to warrant an increase or change of meds. I went this morning and if you have heard the news the Ebola Drs. from Africa are returning to my hospital in Atlanta (Emory University). I wish them the best and know that it is safe but it is amazing that I am going to be suppressing my immune system and a few floors down they are treating Drs. with a terrible disease. Thanks again

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    Good luck with the infusions. I had four in a row, two weeks apart, and never had a bad reaction of any sort. However, it doesn't seem to be working for me. I don't have kidney or lung involvement anymore either, just sinus, but since methotrexate was ineffective and I didn't want Cytoxan, the infusions were my next choice. I hope you have good insurance, because they are ungodly expensive. (One bag for one infusion is roughly $24,000, and that doesn't include any other infusion expenses.) There's also a copay card you can get from the company. That has taken about 90%+ of my cost away. Go to racopay.com for the details.

    Hope it works!!

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    Quote Originally Posted by hmcollin View Post
    I still have swelling in my eyes and inflammation in my sinuses and feel really tired some days. I have moved down to 9mg of prednisone daily and if I move down anymore I get more blood in my daily sinus rinses. I have bloodwork done monthly and no issues with lungs or kidneys and my bloodwork is stable. I guess my question is" Has anyone ever went to Rituxan without having kidney or lung involvement?"
    My sinuses were the indicator that I was having a flare up last year. I never had any blood in sinuses until I started flaring up. My ENT finally walked up with me to the rheumy office and told the rheumy that he had to do something. So after a chest x-ray, we found more lesions. That was my start of RTX for maintenance. I'm still on 150mg of Azathioprine

    Are you crusting up, or just bleeding? If there are crusts, that might be an indication that the wegs is still active in the sinuses. If no crusts, is it just dry up there? I don't have too much trouble with dry nose the way I irrigate my sinuses (3 liters of saline two times a day with a waterpik). Irrigating like I do also helps, even if there is crusting. When there was massive crusting, I used to run 3 liters, get a few out, and still felt like there were more ready to come out. So, I would make another 3 liter batch, rinse some more, and repeat if necessary.

    In my opinion, with this disease, one 8 oz NeilMed bottle a day is not nearly enough rinsing if you have sinus involvement.
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


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    Quote Originally Posted by MikeG-2012 View Post
    In my opinion, with this disease, one 8 oz NeilMed bottle a day is not nearly enough rinsing if you have sinus involvement.
    I agree with this wholeheartedly! I do not do the extensive rinsing, with the water pik and all, as you do, although it sounds great. Since I have lost the bony structures of my nasal cavity, there is less mucus collecting in there, and no crusting to speak of, but the rinsing is still necessary. I use the NeilMed bottle, but just doing it once is pretty pointless. That does little more than start to loosen stuff up. I will usually do at least 3 or 4 rinses and often more, up to 6 or 7, if I still feel like there is stuff in there. I thought I read there was a bigger NeilMed bottle available, and I would like to invest in a water pik with nasal attachment someday. Can't do it right now, maybe in the spring or summer. But my current problems in that area are pretty minor. The big chunks I used to get when my nasal and sinus structures were still intact are a thing of the past. For people with those kinds of chunks, crusting, and all that, I think you could really benefit from something better than the 8 oz. NeilMed squeeze bottle.
    Anne, dx'ed April 2011

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    Good ideas. I will pick up FOUR Neil-med bottles next time I am at Costco. I do often rinse before taking a shower and then again after. This helps get things out.

    Maybe I could put a couple of gallons of saline in one of those sprayers from the garden center and use that?

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    Quote Originally Posted by me2 View Post
    Good ideas. I will pick up FOUR Neil-med bottles next time I am at Costco. I do often rinse before taking a shower and then again after. This helps get things out.

    Maybe I could put a couple of gallons of saline in one of those sprayers from the garden center and use that?
    I don't know about the garden sprayer, Kirk, but at least you could heat up the 4 NeilMed bottles at once instead of having to stop and repeat it each time. Yeah, the shower idea is good; also inhaling steam from a bowl of saline or mint infused water can really help to loosen things up before rinsing, and is relaxing, too.

    I've noticed if I only rinse twice, then I'll go somewhere and the loosened-up stuff will start wanting to come out while I'm driving or worse yet, when I'm out in public. Well, this thread is supposed to be about Rituxan... for any newbies here, there are lots of threads in the archives about sinus rinsing.
    Anne, dx'ed April 2011

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