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Old Thu Mar 10, 2022, 09:25 PM
Matthew42 Matthew42 is offline
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Join Date: Jul 2021
Location: USA
Posts: 130
Well, an update: We went to see my mother's hematologist.

The medicine that Dr. Young proposes is Campath (not N-plate), but he wants to wait 5 more months before doing it. He believes that my mother might need close to 1.5-2 years for a good response to horse-atg and cyclosporine because of her advanced age.

She can stop Promacta as it has no real value for her. He wants her on 100 mg of cyclosporine a day for a while yet. She cannot stop it as it anchors the ATG. It must be a slow taper.

My mother's blood has held at 7.7 for two weeks after one unit of blood. This has never happened before. She's had some real rises in blood in the past but she always dropped down into transfusion-level territory by 10 days. But, this time, things are different: her blood is holding steady for 2 weeks (14-15 days). This is a new thing. But, you never know, things can go back to the way they were at any moment.

The only other news we got is that mother still has iron overload (ferritin = 3000). Her level 6 months ago was 3500. So, there was a little improvement., which was shocking considering she got 30 blood transfusions since her last iron test (3500). It is shocking that her levels were not +5000. Her doctor would like to see it around 1500 or less in the next 12 months (rather safe level). Some natural things do work to lower ferritin for some people. She says that Exjade is not worth it at this point (too many side effects). Also, the iron overload hasn't festered in her body long enough, nor is it excessively high. She can't let her have iron levels over 3000 for more than a few years, even though it can take much longer than that to cause damage to the liver and heart.

Last edited by Matthew42 : Sun Mar 13, 2022 at 12:20 PM.
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