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

  1. #141
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    Quote Originally Posted by Glenda View Post
    Hello there, I have just joined this forum to see what I can find out about WG. Like you I was diagnosed in February of this year, and like you am still having a lot of trouble. My kidney function ranges between 20 to 40%, I have pain in my joints, have trouble with my sinuses, have headaches constantly (sometimes a dull ache but generally quite bad), constantly tired, feel nauseated and feel terrible most of the time. I see my Drs (nephrologist and GP) both monthly or more ofter if they call me in (due to decreasing blood results). I have weekly blood tests. Am on 25mg prednisone, have had 3 months of cyclophosphamide IV, and am on so many BP medications and still have high blood pressure. I always feel I am complaining when the Drs ask how am I. I have had to resign from work as I am so tired, weak and lack any energy. My condition is still not under control.
    I am so sorry you have had to go through all this, but for me it is nice to think all my symptoms are common to people with WG, and I am not alone.
    Hope you start to feel better soon.
    Hi Glenda,
    From reading the vasculitis foundation success stories, I have found that many of them that do not go into remission after a few months of ctx go on with rituximab and find relief fairly quickly.
    Have you asked your dr about options?

  2. #142
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    Quote Originally Posted by Glenda View Post
    Hi there again everyone, I was wondering if someone could answer my questions please. Does WG cause anaemia and low Feritin levels? I have been anaemic since my last kidney biopsy in May when I had a large internal bleed. Then my Feritin levels dropped to 4. I have had an iron infusion, and the levels have improved, but as my Hb comes up the iron levels are slowly decreasing. My Dr is talking about an endoscopy to see if I am bleeding from the bowel, but have had faecal studies x 3 all of which are negative for blood. The second question is does anyone know of a Dr that treats WG on the eastern side of Australia, preferable in New South Wales? I feel this WG may be a little out of my Drs scope of practice, although he is trying really hard to help me. He just seems to worry about the renal function, and dismisses all the other symptoms I have as if they are nothing. I have even had bouts of heart arrhythmias, missing every 3 to 5 beats, but he just says it is quite normal. Thankyou everyone
    Hi Glenda,
    I believe my mom has some internal bleeding, but they haven't found it, yet.
    They did her EGD and colonoscopy while her hemoglobin was 7-8 and it needs to be above 10 to really find the bleeders.
    Vasculitis can definitely cause internal bleeding just about anywhere.
    My mom has had 3 blood transfusions since May, but is now, on Epogen which sends a signal to the bone marrow to create more blood.
    I have seen a procedure on youtube where they use a double ballooning scope to go into the intestines to find bleeds.
    My mom could have bleeding in the lungs, kidneys and/or intestines.

  3. #143
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    Hi daystarr8, thankyou for the information. I have been on cyclophosphamide, but that stopped 2 1/2 months ago, I am still on prednisone 20mg. With my heart beat, it beats at a normal pace at about 80 bpm the skips the beats. I have taken note of it with the BP machine and it shows the pause is the exact time where another beat should have been. My heart doesn't go any faster, be does miss these beats. Yes, I sometimes feel like passing out and once have, but the heart picks up again a beats properly for a while. I might check with the Dr about taking iron medications, about Rituximab and Epogen (if they are available in Australia) when I see him next week. Thanks for all your help.

  4. #144
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    Hi Glenda. About your heart. You need a holter monitor for 24 hrs so they can determine I. You are truly skipping heart beats or if they are just early beats. Early beats are followed by a pause and can be quite common because MOST of them are normal Skipping beats ( dropping a beat) could mean you need a pacemaker. If your heart rate is dropping below 50 beats per min while you are awake and active that is not normal. Have a good cardiologist check you out.

  5. #145
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    Moved recent discussion regarding gigi.palumboshatz to: http://www.wegeners-granulomatosis.c...umboshatz.html for more visibility....
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

  6. #146
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    Skin rash.... I've had WG for over 30 yrs I don't ever recall having a skin rash. Can anyone send me a pic of what there's looks like. Mine is flat and red but not itchy. It's been there for several weeks now. Before the rash I had so
    E soreness close to that area that felt like a bruise. No idea where that came from. Can anyone helpImageUploadedByTapatalk1421788659.608840.jpg


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

  7. #147
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    My son was just diagnosed a month ago. He was on prednisone 60 mg, then went down to 50, and just 2 days ago was put on 40. All of a sudden, he is having joint pain again! He has had one dose of rituxan and due for another Tuesday. Is it possible to already have a flare when he has not even gone into remission yet? He was doing so well, and his joints were fine as soon as he started getting the prednisone. His sinuses completely cleared up. Now I am concerned as he goes down on the prednisone dose he will continue to get worse. He just saw the rheumy, so not due to see him for another coule of weeks. He says he wants to space out the prednisone, because he had taken the 40 all at once yesterday, and this morning, it had been 24 hours, so he feels that's why he was getting the leg pains. Anyone else ever have this problem?

  8. #148
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    Quote Originally Posted by daystarr8 View Post
    Skin rash.... I've had WG for over 30 yrs I don't ever recall having a skin rash. Can anyone send me a pic of what there's looks like. Mine is flat and red but not itchy. It's been there for several weeks now. Before the rash I had so
    E soreness close to that area that felt like a bruise. No idea where that came from. Can anyone helpImageUploadedByTapatalk1421788659.608840.jpg


    P.O.W.E.R. Positive ongoing waves encourage remission
    That looks like my son's face right now! He thinks it is a side effect of the prednisone. I'm not so sure. Very red and blotchy, I call it "mottled." He never had very many skin problems before his diagnosis one month ago.

  9. #149
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    Quote Originally Posted by Trish1217 View Post
    My son was just diagnosed a month ago. He was on prednisone 60 mg, then went down to 50, and just 2 days ago was put on 40. All of a sudden, he is having joint pain again! He has had one dose of rituxan and due for another Tuesday. Is it possible to already have a flare when he has not even gone into remission yet? He was doing so well, and his joints were fine as soon as he started getting the prednisone. His sinuses completely cleared up. Now I am concerned as he goes down on the prednisone dose he will continue to get worse. He just saw the rheumy, so not due to see him for another coule of weeks. He says he wants to space out the prednisone, because he had taken the 40 all at once yesterday, and this morning, it had been 24 hours, so he feels that's why he was getting the leg pains. Anyone else ever have this problem?
    If your son was diagnosed a month ago and has dropped 20 mg/day of prednisone, I suspect that he has reduced his dosage too quickly, and that may be at the root of his joint pain. You may want to bump his dosage back up to 50 mg/day and see if he improves. If he does, future reductions should be done more slowly. As always, please consult with your son's doc about meds and dosages.

    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

  10. #150
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    Quote Originally Posted by Pete View Post
    If your son was diagnosed a month ago and has dropped 20 mg/day of prednisone, I suspect that he has reduced his dosage too quickly, and that may be at the root of his joint pain. You may want to bump his dosage back up to 50 mg/day and see if he improves. If he does, future reductions should be done more slowly. As always, please consult with your son's doc about meds and dosages.

    Good luck!
    My son's doctor is the one who has lowered his dose like that, it was 50 for 2 weeks, then 40 now. He just dropped it. I guess we will have to let him know if the knee pain continues.

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