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Thread: How to know when you're having a flare

  1. #151
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    Trish, I'm so sorry your son is going thru this. I agree with Pete. Doctors try to lower the dose of pred as fast as they can, but this maybe too much too soon. He's only had one dose of RTX & it hasn't really had a chance to work its magic. Give the doc a call. I've no medical background--just my thoughts. Hope he is better soon.

  2. #152
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    Trish. It's possible the prednisone has caused wight gain and fluid retention around the joints which will cause pain. Do not stop taking prednisone it will cause severe pain. Your body becomes addicted to the drug and an immediate stop causes withdrawals. Keep in mind with this disease there are good days and bad days.


    P.O.W.E.R. Positive ongoing waves encourage remission

  3. #153
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    Having a little cold and my throat is starting to hurt and my ears are stuffed.
    Currently on 10mg of prednisone down from 60.
    How do I know if this is a flare up or a regular cold??

  4. #154
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    Quote Originally Posted by mordeco View Post
    Having a little cold and my throat is starting to hurt and my ears are stuffed.
    Currently on 10mg of prednisone down from 60.
    How do I know if this is a flare up or a regular cold??
    Mighty hard to know for certain since Wegs can cause all sorts of symptoms. Even if it's just a cold, you may need a doctor to beat it with a compromised immune system. Take no chances. Even a cold can mess up a weggie and cause more severe problems.

  5. #155
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    Try OTC cold remedies, extra vitamin C, force fluids, and rest. If you feel better after a couple of days, it's probably a cold. If you get worse, call your doctor. Good luck!!
    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

  6. #156
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    I have been diagnosed with Wegeners since Dcember 2015 and initiall had a Plasma exchange although it was touch and go between that or Dyalisis due to kidney failure.Anyway after a fortnight i then had chemo for about 6 months every 4 weekly infusion but then came off it and was taking Azothioprine and Pred.Then in Nov 2016 my bloods showed relapse with it coming back so then had 2 infusions of Rituximab then high dose of Pred and Azothioprine which i am still on although my consultant has been reducing my steroids slowly.My point is through my regular appointments with my consultant and blood tests each time they can monitor me very well and see any variation quickly and act accordingley.Apart from that doing ok but get tired easy and after being an active person in my tounger days playing rugby and all sorts of things i find it frustrating that i have to stop.Its taken me a while to get used to LISTEN to my body and when it says no it means NO.

  7. #157
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    I have to say on my behalf my consultant reduces my Pred very slowly i was on 80mgs per day but now on 10 mgs but this was reduced very slowly and it works for me and this was after my Ritux.

  8. #158
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    Smile How do you know

    Well it's hard sometimes because the signs are like a cold or allergies. I gather my thoughts of what my symptoms are, how long have they been going on and are they getting worse? Do I sleep more? Are my eyes itchy too? Is my nose more bloody or is it now painfull again? It is hard for me too because my symptoms come and go. But if it's persistent and you aren't feeling the best then chances are you are in a flare. My last flare we only used steroids for a few weeks but I caught it early. I'm doing good again. I've battled this for 38 years now. I was 9 when I was diagnosed it caused a stroke then and lots of damage to my ears and sinuses. In my teens it got my airway. But with bactrim introduced in my 20's I stay pretty clear of it one 9 year remission and on my 14th year remission my last flare was last year and no drugs so I'm not counting it a battle
    i hope this helps you...😁

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  10. #159
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    I want to be an encourager to all of you. I have had Wegenes since 1981. My doctor tells me I am one of the longest living. I had a relapse in 2008 and in 2010. Since then I have yearly Rituxin infusions. It is working. Doctor is Dr. John Cush in Dallas Texas. He is a rheumatologist and is well-trained in Wegeners. I am extremely healthy. I have some loss of kidney function. But my kidney doctor seems to think I am doing well. I hope this encourages all of you who are suffering because there is hope. I did Cytoxin and prednisone all three times it was active. I recommend Riituxin to keep it in remission. I am almost 70 & play golf and work out regularly. God bless all of you! There is hope.

    Mike Cavender
    Dallas,Tx
    [email protected]

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  12. #160
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    Hi Mike,

    I'm right with you! I'm only six years in, but still active (walk 3-4 miles most days, play the occasional round of bad golf, and keep up with three young grandkids). I'll be 71 in a few weeks. We need to keep on keepin' on!!
    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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