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Thread: What's next typically?

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    Default What's next typically?

    Hi All,

    I had my follow up with rheumatology today and they are going to continue my pred taper! I've been at 40 mg about 4 weeks. (After 60 mg for 6 weeks) Now they are going to decrease me by 5 mg every week til I'm at 20. then they'll see how I'm doing before going lower.

    I have my next Rituxan infusion in Dec and then they will continue that every 4-6 mos.

    My question is this: when a person comes off prednisone don't they start a maintenance drug like methotrexate or immuran? Or is that comparable to continuing with Rituxan?

    I guess I thought a new med would be starting but I forgot to ask about that at my appt.

    As a side note, they did a lot of labs today to recheck my c-ANCA and other markers. Plus urine labs to check kidneys.

    Thx
    Gab
    Trust in the Lord with all your heart
    and lean not on your own understanding;
    in all your ways submit to him,
    and he will make your paths straight.
    Proverbs 3: 5-6

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    Some use AZA or MTX for maintenance along with smaller dosage of prednisone. Others may use RTX every few months. Jury is still out about these options with no clear cut advantages known yet for either approach and it might vary according to patients and nature of their disease. There is much research going on for this issue.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Pred and mtx don't do the same things. mtx is an immuno suppressant as is rtx. Generally, from a maintenance perspective, you'll see people on both pred and mtx or some variant of mtx/rtx/ctx/etc. Eventually, your rheumy will want to get you off pred, but it could take a very long time. I don't think many people ever go off the immuno suppressant -- I could be wrong, tho.
    Wegener's (​GPA )- Apr10, Granulomatous Hypophysitis - Apr10, Diaphragmatic Paralysis - Feb16, Bradycardia - Dec16, Fibromyalgia - 2017. (my story)
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    I am the exception, drug free remission. Doesn't happen too often. Best to you on your journey.
    Dale
    Dx Aug, 2009 Remission June 2010 until 8/1/2014

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    One research study I recall showed about a 60% relapse for first year or 18 months after being drug free and 80% within three years. So some people must attain a drug free remission but no way yet to predict who will succeed in doing so but lot of research going on in this area to try learn who and why. I wonder though if those considered in drug free remission still have residual symptoms of Wegs like those of us on maintenance drugs.
    Knowledge is power! Wisdom is using it to make good decisions!

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    I was in a clinical trial involving Rituximab and I stopped all rituximab and prednisone in April 2015 and made it until July 16 before I had a flare. New treatment plan was 4 infusions if Rituximab and prednisone started at 60 mg down to 17.5 per day now. Taper will be done by Jan and I will get a rituximab infusion every 4 months and that should keep me in remisson. Best wishes as your treatment moves forward

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    As someone with "limited" GPA, I had the pred taper discussed in other threads, and then have been on mtx since. I've been told by my rheumatologist that I should stay on the mtx as long as I can tolerate it, i.e. as long as my body is handling it ok, as there are studies suggesting strongly that coming off of maintenance meds (such as mtx) greatly increases the chance of flares/relapse. Possibly your docs will be recommending rtx as your long term maintenance med. I am not an expert on the efficacy of rtx vs mtx, but rtx is vastly more expensive, so if cost/insurance coverage in an issue that might be a topic to discuss with your doc.

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    Quote Originally Posted by renidrag View Post
    I am the exception, drug free remission. Doesn't happen too often. Best to you on your journey.
    Dale
    Hi Dale, It's great to hear there is chance of a drug-free remission. Drz was asking in the post after yours (on this thread) if "I wonder though if those considered in drug free remission still have residual symptoms of Wegs like those of us on maintenance drugs." Did you have any symptoms during your remission? When you had a flare in Aug 2014 how did it show up for you? Did you realize it was a flare right away? I ask because that would be my fear... a flare starting and me not realizing it is a flare (instead of a head cold or something) How did they treat your flare and are you now back in a drug free remission again?
    Thanks,
    Gab
    Trust in the Lord with all your heart
    and lean not on your own understanding;
    in all your ways submit to him,
    and he will make your paths straight.
    Proverbs 3: 5-6

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    Gab, I had a cold once that seemed to drag on, though it was fairly mild, and eventually I transitioned into having a WG flare. When I really felt that it was a flare was when I started having night sweats and a feverish feeling, and I think that was accompanied by more coughing and mucus and just more fatigue in general. My inflammation markers went up and the doc increased my MTX from 10mg to 15mg per week. I'm quite certain that 10mg was never enough in the first place, and I was undermedicated. At that time, he left my pred where it was, at 10-15mg/day, and the increase in MTX took care of the flare. The next time I had a flare it was a little milder, but with the same symptoms, and I was still at 15mg. MTX, and he chose to increase my pred instead, which worked OK. I haven't had a flare for a couple of years, but have had other residual issues and am definitely not in drug free remission, but may be at or close to a medicated remission. My doc hasn't used the "R" word, so far. Anyway, I think I can tell the difference between a cold and a flare, and this comes with experience, and I think you will get a feel for it as time goes on. Although I hope you don't have flares.... and if you do, I hope they are mild and easily controlled.
    Anne, dx'ed April 2011

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