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Thread: Aiming for drug free remission...

  1. #11
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    Default Re: Aiming for drug free remission...

    Quote Originally Posted by Alysia View Post
    Come on @vdub, dont let the dumb docs fool you. There is NO sinus infection in Fybromyalgia ! And cns issues are too serious to dismiss like that. Get a second opinion. Besides, you know yourself better then any dr. What do YOU think ?

    I would say that your wg is smoldering if not already flaring. I would send the mayo docs straight to hell and find a decent dr and get a decent treatment.

    I might be wrong. @mishb @marta what do you think ?
    Others around, what do you think ?

    Attachment 2634
    @Alysia: I don't think I'd drop my Mayo docs out of hand. They are among the best. However, @vdub I think I'd want to get together with them and a great neurologist (all in the same meeting) and have an in-depth discussion, if you haven't done so already.
    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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  3. #12
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    Default Re: Aiming for drug free remission...

    At this point, I just want a break from all of it for a while. Even a couple months would be great, so that's what I'm shooting for.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
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  5. #13
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    Default Re: Aiming for drug free remission...

    I tend to agree with Alysia, but I don't think I would get rid of your specialists so quickly.

    I also don't blame you vdub, for wanting a few months off, however, as Alysia has already pointed out that your know your body better than anyone, please please, listen to it over the next few months so that the break doesn't turn nasty.

    Fingers crossed for the couple of months to last longer than anticipated
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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  7. #14
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    Default Re: Aiming for drug free remission...

    I don't think that wegs is going to take any time off for me. I've been doing well since the Rituxin infusions back in May. I don't like the drugs, etc but right mow I'm having a flare so I think my medicines are the lesser of evils.

  8. #15
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    Default Re: Aiming for drug free remission...

    A drug free remission is my goal as well. Had my second round of rituxan today. I had one two weeks ago and before that had it 10 months ago. I'm on no other drugs except for the rituxan and am contemplating going drug free until I flare provided labs are good. My rheumy wants me to do rituxan every 6 mos but if I can extend that 6 mos to 1 year or longer I would feel better about taking this powerful drug. Previously I was on prednisone, cellcept, plaquenil, dapasone. I do feel that rituxan works wonder but am wondering if others have achieved drug free remission after a few rounds of rituxan.


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  9. #16
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    Default Re: Aiming for drug free remission...

    I would just like to emphasize that every case is different, and the ability to achieve drug free remission probably depends on many factors.

    Best to all of you.

  10. #17
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    Default Re: Aiming for drug free remission...

    Quote Originally Posted by HazelEyed View Post
    A drug free remission is my goal as well. Had my second round of rituxan today. I had one two weeks ago and before that had it 10 months ago. I'm on no other drugs except for the rituxan and am contemplating going drug free until I flare provided labs are good. My rheumy wants me to do rituxan every 6 mos but if I can extend that 6 mos to 1 year or longer I would feel better about taking this powerful drug. Previously I was on prednisone, cellcept, plaquenil, dapasone. I do feel that rituxan works wonder but am wondering if others have achieved drug free remission after a few rounds of rituxan.
    Potency is certainly objective. I had far too many symptoms while on pred and other meds!! I flared up when Mychophenolate failed, and believe me, you don't want to flare up. I was told that flare ups are cumulative. The damage done isn't always as bad, but it adds on to the last set.

    I had a bad enough flare that I am going to stay on RTX as long as insurance will keep paying for it, or there is another miracle drug found.

    For me, labs were not always that conclusive and I would rather be safe than sorry later.

    Just my .02 this morning.
    MikeG-2012

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


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  12. #18
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    Default Re: Aiming for drug free remission...

    Absolutely if you have objective or subjective evidence of disease activity, then it's not time to consider stopping any meds that are helping you. In my case I think the meds were causing more problems than they were preventing, just in terms of overall well being. Time will tell I guess. For now, I definitely feel happier, stronger, and more energetic without them. Fingers crossed.

  13. #19
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    Default Re: Aiming for drug free remission...

    Quote Originally Posted by MikeG-2012 View Post
    Potency is certainly objective. I had far too many symptoms while on pred and other meds!! I flared up when Mychophenolate failed, and believe me, you don't want to flare up. I was told that flare ups are cumulative. The damage done isn't always as bad, but it adds on to the last set.

    I had a bad enough flare that I am going to stay on RTX as long as insurance will keep paying for it, or there is another miracle drug found.

    For me, labs were not always that conclusive and I would rather be safe than sorry later.

    Just my .02 this morning.
    I am with you. Not going to stop any med. I was late only 6 weeks for rtx and flared in my eyes (which were not involved before).
    Alysia
    dx 2008


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  14. #20
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    Default Re: Aiming for drug free remission...

    I have been on aza for over 4 years, my reumy has got me on a slow taper to see if I can be drug free, every 2 months I am dropping 25mg of aza, I hope to be drug free by February, I have my blood work taken each month just to be sure.

    Live to dream......Dream to live.

    Regards Woz.

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