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Thread: New old guy on the block

  1. #51
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    Quote Originally Posted by Debra C View Post
    This may be a stupid question but how does one know when they are generally having a flare or just being "plain" ill ?
    I don't think this question is stupid at all. I'd like to know the answer(s), but if they're not forthcoming, I guess I'll call my wegs doc for guidance.
    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

  2. #52
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    Quote Originally Posted by Pete View Post
    I don't think this question is stupid at all. I'd like to know the answer(s), but if they're not forthcoming, I guess I'll call my wegs doc for guidance.
    I don't think it's stupid either! I just don't think there's a definitive answer to it, except getting tested to see if your inflammation markers have risen, etc. Otherwise, it's just intuitive... you are familiar enough with your Wegs symptoms that you get a sense of whether what you might be flaring or just have a bug, or both.... the worse you feel, and the longer you feel that way, the more chance you are flaring, I guess.... and a bug can trigger a flare.
    Anne, dx'ed April 2011

  3. #53
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    Quote Originally Posted by Pete View Post
    Hi Anne,

    Glad to hear you're feeling a bit better, but worried about the continuing wegs symptoms. Any chance you could get labs and the chest x-ray sooner before the symptoms get worse?
    Thanks, Pete! I'm actually feeling better, though I'm still coughing, but I was before the bug anyway. The blood in nose could be partly from the onset of winter and dry, cold weather or use of wood heat. I'm not in remission so still expect to have symptoms. Since I feel better, I think I'll wait until my scheduled appointment.
    Anne, dx'ed April 2011

  4. #54
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    Quote Originally Posted by annekat View Post
    Thanks, Pete! I'm actually feeling better, though I'm still coughing, but I was before the bug anyway. The blood in nose could be partly from the onset of winter and dry, cold weather or use of wood heat. I'm not in remission so still expect to have symptoms. Since I feel better, I think I'll wait until my scheduled appointment.
    Residual symptoms like some coughing, mucous running down the throat, bleeding in nasal passages can all happen at times even when you are considered in a drug induced remission according to my doctors. Being in a drug induced remission means I am considered stable enough so no additional treatment is needed beyond my regular maintenance meds and treatment regime. Damage to sinuses and resultant excess mucous down the throat is considered a very common sign of Wegs damage to sinuses just like many of us having hearing or vision loss, kidney or lung damage etc. For me the excess mucous leads to some coughing at times and can also affect my voice but I don't usually need any extra treatment unless i get a cold and it turns into sinus infection or bronchitis or both. Changes in humidity seem a big factor for me and when the furnace or heating systems start up in Fall and when the air gets drier these symptoms greatly increase. Using an humidifier and more nasal rinses helps me. Allergies to dust or other things also increase these symptoms for me.

    I came down with my first cold in months and needed to also add some generic Muccinex to thin the mucous and help me cough it up. So far I think I will be able to beat the usual bronchitis this time. The soreness and hoarseness has disappeared and my coughs are more productive.

  5. #55
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    drz, that all sounds like the stuff I'm going through, and though no one has said I'm in any kind of remission including drug induced, I think I may be close to that. I know I have significant sinus damage and expect to be dealing with its repercussions from now on. I also had that cold recently and have also started the generic Mucinex again, which I previously took daily for a couple of years and only stopped a couple months ago to see if I could do without it. I think it is good stuff and haven't heard of any side effects or dangers. I do know it works better if one drinks plenty of water while taking it. I think there is less to cough up than there was, but I still have a sort of raw irritated feeling in my throat and windpipe which can lead to some dry coughing. Sounds like the same old Wegs, just maybe stirred up a bit by the cold I had. I am just a bit worried about tracheal stenosis since I've read about it on here and think I'm a possible candidate for it.... I plan to bring that up with my doctor on the 29th.
    Anne, dx'ed April 2011

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    hi my name is crissie. Im the supportive wife of dennis wegs patient.. We are pretty excited today, yest told by hes specialist rhemu that hes finally in remission after 15 months of treatment.4 infusions of rtx has worked and 1 infusion of cortisone. unfortunately ctx made dennis develop lymphopenia in august 2012, it took 2 months of negioting with specialists and govt for the rtx treatment. he is in consolidation period now 100mg of immuran 10mg of cortisone bactrim fosamax vit d and caltrate. he had major sinus issues with granulomatsis of the lungs aug 2011.I just want to thank everyone on this site without your support and knowledge we were completely alone here in australia No support networks at all.

  7. #57
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    Nice to meet you, Chrissie, and glad to hear that Dennis is in remission! I will have to look up lymphopenia.... doesn't sound too great. But you sound upbeat, which is good!
    Anne, dx'ed April 2011

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    Quote Originally Posted by dennis2512 View Post
    hi my name is crissie. Im the supportive wife of dennis wegs patient.. We are pretty excited today, yest told by hes specialist rhemu that hes finally in remission after 15 months of treatment.4 infusions of rtx has worked and 1 infusion of cortisone. unfortunately ctx made dennis develop lymphopenia in august 2012, it took 2 months of negioting with specialists and govt for the rtx treatment. he is in consolidation period now 100mg of immuran 10mg of cortisone bactrim fosamax vit d and caltrate. he had major sinus issues with granulomatsis of the lungs aug 2011.I just want to thank everyone on this site without your support and knowledge we were completely alone here in australia No support networks at all.

    I'm glad he is finally over the worst hurdle Crissie......it certainly has taken a while.

    Hopefully now Dennis can start feeling a little bit normal again and you can start to get your old life back.
    .......no looking backwards now. Fingers crossed for complete med free remission in the future.
    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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  10. #59
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    Had my checkup with Dr. Villa Forte today. All is well. I'll resume the pred taper this weekend (now at 5 mg/day). If all goes well, I could be off the stuff in a couple of months. Keeping my fingers crossed that the remaining taper will go well.
    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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  12. #60
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    Nice, but just take it slow don't rush, many did and had to go back up.
    Jolanta

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