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Thread: Drug free remission

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    Default Drug free remission

    I would be interested in hearing from anyone who is in drug free remission. As far as I can tell there is not really any medical consensus regarding how long to continue maintenance meds, such as MTX. If you are off of maintenance meds, how long has it been, what meds were you taking, and have your symptoms remained stable? I am injecting 15 - 25mg of MTX weekly and have been doing that for the better part of three years. I have "limited" GPA, i.e. no renal or lung involvement, so compared to many I have been lightly touched by this illness. I would love to get off the meds. I need to check in with a rheumatologist, since my meds and labs are handled locally by my PCP, but it would be great to know about your experiences or what advice you have heard.

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    I went 18 months drug free and then I had a flare. I was on Rituximab infusions and prednisone. It was part of a clinical trail. Had 4 weekly infusions and then an infusion each 3 months for 2 years and tapered prednisone over the time period. 18 months of no drugs was nice but since the flare I get rituximab infusions every 4 months to maintain remission

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    This is something I had intended to ask the group myself.

    I do have lung and kidney involvement. I take Cellcept 750mgs x 2 daily and have done so since January 2009. It took me a few years to reduce the prednisone but eventually got down to 2.5mgs .... which I have taken as a maintenance dose daily since early 2013. I have been stable on this protocol for over 8 years with the exception of a few minor flares. Increasing oral pred for a few weeks was enough to dampen the minor flares and I quickly returned to my maintenance dose. I have had one major flare and received IV cortisone 500mgs x 3 days which worked well. I was soon back in remission and recommenced maintenance treatment

    My Rheumatologist has told me I must stay on meds for life as he feels that a major flare whilst not on meds would cause more damage to my already damaged lungs and kidneys. However my Pulmonologist was quite surprised by this as was my Nephrologist.

    So yes, I would be very interested in what the medical consensus is among doctors treating members of this support group as to how long they should stay on maintenance meds. Have you, like me, been told that you should stay on them for life?

    Rose
    Last edited by Rose; 05-10-2017 at 07:03 AM.

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    I've been told by one rheumatologist that I should stay on MTX for as long as I am tolerating it well, because there is no definitive research to tell us what the optimal length of treatment is. I suppose it depends on the individual and the particular features of his/her disease. We know that the relapse rate is fairly high for those who go off meds, but I don't know how that rate relates to whether one has limited or more severe disease, etc. I have not had any true flares that I know of, but I think MTX makes me a bit ill. My labs are stable but for fluctuations in liver enzymes. My day to day symptoms are all due to damage done to sinuses, nose and ears - - no active disease. I'd love to quit the meds and the constant vigilance over labs. I guess it's a small price to pay for keeping disease at bay, but it's still something I'd like to put behind me.

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    I had my last pred on 7/10/16 after a very slow taper. My last RTX was on 7/1/14. No other drugs since the last pred. So far so good but of course, things can change in a heart beat.

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    Thanks for the replies. For those going to the symposium in Chicago the question of how long to continue maintenance meds might be good to bring up. (I have not ruled out the idea of going myself.)

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    Quote Originally Posted by Alaskatom View Post
    Thanks for the replies. For those going to the symposium in Chicago the question of how long to continue maintenance meds might be good to bring up. (I have not ruled out the idea of going myself.)
    Would love to see you there Tom!
    MikeG-2012

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


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    My Rheumatologist is also of the opinion that as long as I tolerate the meds well I should stay on them. He says to take a chance and face a full blown flare is not worth it.

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    Quote Originally Posted by Marius View Post
    My Rheumatologist is also of the opinion that as long as I tolerate the meds well I should stay on them. He says to take a chance and face a full blown flare is not worth it.
    Ditto for my rheumy and my treatments.
    MikeG-2012

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


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    Hey Mike,

    I can't make the Symposium this year. Would it be possible for you or other attendees to pose the following?

    1. What are the long-term effects of low-dose prednisone? I've been at 5 mg for three years now. Also, what can we do to minimize any effects?

    2. For those of us who were on cytoxan for an extended time, what screenings should we have to catch bladder cancer early? I'm thinking of having periodic cystoscopies in addition to my bi-monthly urinalysis. I took 150 mg/day for 16 months.

    Thanks!!!
    Last edited by Pete; 05-22-2017 at 11:39 PM. Reason: Added info in point #2
    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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