Good morning.
A bit confusing today.
His creatinine level rise to 1.5. Dehydration had been ruled out. They wanna do ultrasound of kidney today and biopsy tomorrow 1130 (if numbers don't improve). There can be two causes: either vasculitis or due to medication. They did switch some medication. Additionally, there are two inflammatory marks that they are watching. When he was admitted his crp was 17; after steroids it decreased to 1.1, but today it went up to 2.3. Also, his sedimentation rate is at 17. The alternative treatment would be cytoxen, which I am not pleased about.
Thank you
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Creatinine is at the high end of normal. (Mine is typically at this level with slight kidney damage.) CRP is well within normal. Sedimentation rate is still pretty high. Hope the ultrasound proves negative and they don't have to do a biopsy.
Cytoxan is often used to induce the inital remission (along with high dose steroids). Should be on it no more than 4 - 6 months. Make he stays well-hydrated while on cytoxan and that he urinates whenever he feels the urge as the metabolates of cytoxan are hard on the bladder.
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
Thank you so much.
On both the creatinine and crp, they are worried about its direction.
Thank you for your wishes on the ultrasound.
I am worried about side effects with the cytoxin.
Should I be?
I know his health is the most important issue at hand, but is this elevated step necessary at this time?
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Cytoxin (Cyclophosphamide) is not unusual as a treatment for Wegs. It's what I took immediately after diagnosis and for the first year and a half (150 mg).
Mostly, relax... you gotta stay calm and informed, which it sounds like you're doing by knowing test results. Don't expect instant improvement or be discouraged on a daily basis, especially when the test results show dramatic improvement. Consider pushing the hospital to do ALL the tests they can do. Make them use every piece of diagnostic equipment they own. That's a good thing since it becomes more difficult once he's discharged.
Yes. It's a dangerous drug but far less dangerous than untreated Wegener's.
Read this...
http://www.wegeners-granulomatosis.c...html#post98791
And there are plenty more stories like it to read here.
Last edited by Birdie; 11-18-2015 at 06:02 AM.
yes; thanks.
staying calm is important.
a question would be if this hospital exhausted their diagnostic possibilities; would a transfer be an option?
Agreed; he is being treated with rituximab; the question was if he should be given cytoxin as well.
Obviously, if there's no alternative, it must be done.
Thank you
I doubt they'd do both. It takes a some time no matter what the medication.
Cytoxin is the dangerous method. It's used like a hard knock down punch to knock the Wegener's out of a patient. Once it's under control, in a few months or 1 1/2 years in my case, then something else is used for maintenance.
Pete is in your neighborhood and often raves about his expert Wegener's care. That's what you need, Wegener's experts. Wish I had em.
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