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

  1. #161
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    Quote Originally Posted by Pete View Post
    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!!
    Anyone older than Pete on here besides me.
    Knowledge is power! Wisdom is using it to make good decisions!

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  3. #162
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    I had no idea you can get wegeners in the brain. I'm so sorry you are going though all of that.


    Sent from my iPhone using Tapatalk

  4. #163
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    My recent flare was nonstop coughing, coughing up blood, runny nose, tired, short of breath, tight feeling chest/chest pain and inflamed sinus causing me to have surgery, and bilateral eye pain and swelling.

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  6. #164
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    I am sorry Elephant that it's come back on you. I am wishing you all the best to stomp the bad Weg's dog down again. Please take care of yourself!

    Mike, Thanks for the inspiration of dealing with Wegener's for so long and being so active! Keep up the good health!
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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  8. #165
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    Hi, I'm new here and just wanting to ask a question. I have had GPA (Wegeners) since 2001, I have been in remission for quite some time but had a flare awhile back and was put on Rituximab and have several treatments. Back in remission now but had an eye problem, even tho the docs said it wasn't the Wegeners they want me to start taking Retux every 6 mo's as a prevention along with Tenofovir for the liver. I'm just wondering if I should refuse the Retux and all, since there is no sign of relapse? I mean would it be bad to just wait till I have a flare or relapse? I have never questioned the Docs before but last time I did Retux it gave me shingles and I had NEVER had them before and a few days after the infusion I got chest pains so bad that I ended up in the ER. Although they said they didn't think the chest pain was associated to the treatment the shingles were. This Tenofovir is to keep the Retux from causing me to get Hep B since I had it when I was 20 yrs old. I'm 63 now and never had a problem but the Tenofovir can cause Kidney and liver problems. Anyway I'm freaked about taking all these drugs when I'm not even having a flare, the drugs I've been on have caused me to have cancer, osteonecrosis in both hips and shoulders etc. I just don't know what would be best ... any help?

  9. #166
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    I think this is a situation in which you need to ask your doctor to explain the why of this treatment plan. I would also ask about the most likely side effects and what will be done to mitigate them. Don't leave your doctor's office without understanding and having confidence in the treatment plan.
    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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  11. #167
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    Thanks Pete, the treatment is coming up in a couple days and its at the VA. Its really herd to get an appointment to sit down for a talk so I guess I'm just gonna take the treatment and hope for the best. I really hate all the drugs I have had to start taking since all this started and the more I read on the side affects the less I want to take ANYTHING but the thought of what could happen with no drugs is even less appealing. I didn't read the sides until recently, maybe I should just stick my head back in the sand and go with what they throw at me, I don't know, this really sucks. Everything was going so well before the relapse, guess I should have known something was coming.

  12. #168
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    Dave, you really need the time from your doc to understand this. Your life may be on the line. It's serious. Stand up for yourself, please!!
    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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  14. #169
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    What kind of eye problems were you having? rituxan can cause chest pain, I looked it up. Look at important safety information and indications.

  15. #170
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    Hi, I was diagnosed with Wegs in April 2016 since then I've been on predisone & 4 rounds, once a week of Rituxan & one maintenance treatment this past April. I'm getting another maintenance treatment this coming Thursday, however, I've been sick with a bad cold for about 10 days. I'm on antibiotics but I still have a cough. Unfortunately this cold I think has started a flare in my body. I"m getting low grade fevers 99-100 and I'm very fatigued. I don't think this is related to the cold. I have a email into my doctor but I'm worried i may not get the treatment on Thursday. I really need this treatment. Also another reason why I'm probably flaring is I've been tapering since May from 5mg predisone to 1mg. I.m currently on 1 mg. Has anyone experienced this? What does the doctor do when flares happen.

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