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.
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.
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.
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.
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
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
Bookmarks