DEXA scan revealed Osteopenia, a progression towards Osteoporosis. But I am not too worried about it (yet). Pain in the right arm was gone by Saturday evening that day. It has been fairly quite since then with occasional pain but not lasting more than an hour or so. Visit to Stanfords was relieving. Dr. Utz stressed - once again - on the European regimen of usage of Cyclophophamide. They use 1.5 - 2.0 mg / kg of Cytoxan for 3 - 6 months and start tapering it withing the next 3 months adding Imuran to the list. It will be 1 year in April since I was started on Cytoxan. Prolonged use of Cytoxan can cause toxicity in the body that can lead to bladder, lymph nodes or bone marrow cancer. Need to get Shapiro to start tapering Cytoxan asap. We have an appt. with him today hoping to convince him...
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Hello Raj,
ReplyDeleteSorry to hear about the WG diagnosis and I wish you all the best! My 14 year-old daughter Holly was diagnosed in November/2010 and it has been tough to come to terms with it. She has made amazing progress and the disease itself is in remission, however, her kidneys were damaged and that is an ongoing concern. You mentioned that you had elevated liver enzymes on your tests and I was just wondering if the onset of that was rapid? Holly's AST, ALT, GGT are just above the normal range while her LDH has reached 300 (about 50 points over her range). All levels have shown steady increase over the past month or two while all other elements in her tests have shown improvement. The doctors are concerned that it is an infection but Holly doesn't appear to have any indication of that. She is on sulfatrim/cotrimoxazole as well as the cyclo and pred. Your comment about the bactrim on the WG site has tweaked my concern that this may be the culprit in her case.
Any comments would be greatly appreciated.
I appear to be waiting for "activation" of my account on the WG website so I couldn't reply to your comments on there.
Once again.... hope all is well with you.
Gary
Gary hi, sorry to hear of your daughter. I can understand how difficult this could be for you and your wife. My liver issues remain a mystery. However the levels started declining on themselves. As you can see in the graph in the blog… the enzyme levels shot up rather rapidly and it took about 4 weeks for them to settle, however it does not appear that it was due to Cytoxan or Bactrim. I have continued to take Bactrim and have had no issues since then. But then everyone responds to drugs differently. Make sure you log every detail on a daily basis. Do not rely completely on doctors, keep an watchful eye. Make sure you see a Wegener Rheumatologist and a nephrologist who has treated many WG patients.
ReplyDeleteHope your daughter swings back soon. Good luck… - raj