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Thread: Remission - what does it feel like?

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    Default Remission - what does it feel like?

    For all those that have reached remission at some point.
    I would like to know if any of you notice any differences at the point you reached remission.

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    I'm in a drug-induced remission. I feel pretty much as I did before disease onset. Energy level is down a little, but that probably goes with being 68...
    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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    Quote Originally Posted by Pete View Post
    I'm in a drug-induced remission. I feel pretty much as I did before disease onset. Energy level is down a little, but that probably goes with being 68...
    Hi Pete,
    Did you notice this difference right at the time of remission or did it take awhile after reaching remission?

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    Definitely echo Pete's thoughts. I'm in a drug induced remission as well since last May. I'm not sure that I will ever feel as I did before Dx's, or for that matter look as I did. The disease certainly did damage. It is nice to be able to exercise again, not get winded or out of breath, but I have slowed down. I do get tired more easily and I can no longer just go, go, go. I don't stress too much between appointments or constantly worry about labs. If the disease comes back, then I'll deal with. I just don't spend too much time worrying about it right now.

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    Quote Originally Posted by mrtmeo View Post
    Hi Pete,
    Did you notice this difference right at the time of remission or did it take awhile after reaching remission?
    .

    It came gradually. I was feeling better after my rtx infusions in 10/13, but I had to diet and exercise to get back to feeling really good. Probably took 6-8 months after rtx to feel normal.
    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 was in drug free remission for over four years and still struggled with fatigue and SOB. However I was a smoker. I walk one mile every three days. That is pretty much it. Back on low dose pred since 8/14, no great improvement. Also have neuropathy.
    Dale
    Dx Aug, 2009 Remission June 2010 until 8/1/2014

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    Jaypfei, great advice! In over 8 years I've never returned to my old energy level. I've learned to pace myself though. If I have a big day planned for Saturday, I will be sure to rest up Friday. On bad days I do paperwork and sitting stuff. Its really OK to let your body tell you when to rest. I used to try to 'push through' but usually ended up sleeping for three days afterward.

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    I think I may be in a drug induced remission now, though my doc hasn't used that word yet. I feel the best ever since dx and am not flaring as I've done in the winters of 2013-14. But I still get the fatigue and SOB as mentioned by others above, still have mucus and coughing to deal with, all of which may vary according to how much activity and stress I've been through. The feeling of being in remission is gradual, it doesn't just happen one day. I know that at my last bloodwork my inflammation level was normal, for the first time since dx. So that bolsters my feeling of possibly being in remission. The continued symptoms may be from permanent damage to my lungs, sinus and nasal cavity structures, and ears, and those things won't change much if at all. I still have a a little neuropathy in my feet, but not as bad as Dale's; again, permanent damage or that which takes forever to heal. Since there is no cure for Wegs or other vasculitis, I would deduce that the disease is still lurking in us the rest of our lives, even if it is in remission, and most seem to be dependent on the meds to keep it there, and can't just stop them. Meds or not, it might not take much for Wegs to rear its ugly head again for someone in remission. And apparently keeping our lifestyle choices healthful and avoiding a lot of stress, overwork, or social commitments can really help a lot to prolong the remission we are in. That's my take on it, without knowing for sure if I've reached remission. I may get a better clue with my next bloodwork at the end of this month.
    Anne, dx'ed April 2011

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    Very happy for you Anne. I know I am not able to clean the gutters, I sure would try. The "R" word is really good to hear, hope you do soon.
    Dale
    Dx Aug, 2009 Remission June 2010 until 8/1/2014

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    Quote Originally Posted by annekat View Post
    I think I may be in a drug induced remission now, though my doc hasn't used that word yet. I feel the best ever since dx and am not flaring as I've done in the winters of 2013-14. But I still get the fatigue and SOB as mentioned by others above, still have mucus and coughing to deal with, all of which may vary according to how much activity and stress I've been through. The feeling of being in remission is gradual, it doesn't just happen one day. I know that at my last bloodwork my inflammation level was normal, for the first time since dx. So that bolsters my feeling of possibly being in remission. The continued symptoms may be from permanent damage to my lungs, sinus and nasal cavity structures, and ears, and those things won't change much if at all. I still have a a little neuropathy in my feet, but not as bad as Dale's; again, permanent damage or that which takes forever to heal. Since there is no cure for Wegs or other vasculitis, I would deduce that the disease is still lurking in us the rest of our lives, even if it is in remission, and most seem to be dependent on the meds to keep it there, and can't just stop them. Meds or not, it might not take much for Wegs to rear its ugly head again for someone in remission. And apparently keeping our lifestyle choices healthful and avoiding a lot of stress, overwork, or social commitments can really help a lot to prolong the remission we are in. That's my take on it, without knowing for sure if I've reached remission. I may get a better clue with my next bloodwork at the end of this month.
    Hi Anne,
    Please, let us know how your blood work comes out.

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