Hi Debra,
A couple of things to keep in mind with FE. FE is an accute phase reacant meaning anything can cause it spike higher. An infection, bad blood draw, and inflammation can cause it to react. There were times we saw John's jump 1000 points from one draw to the next. So once your FE is high, say 1000 +, it's not very reliable as to how much iron you really have. But it is safe to say that your dad's iron is high. How many red cell transfusions has he had?
With a creatine that high, your doc should stop the Exjade. I'm glad you did it for him. Exjade can effect it big time and can be serious. Read the insert on it or go to
www.rxlist.com If the Exjade is the cause, it can take about one month for it to normalize. Again, desferral may be a better option. 2000 is the max dose and may be too much for your dad. Do you know what his creatine and bun were prior to starting? His doc should have run a base line on all his labs. I would not start up the Exjade until his kidney function tests normalize and then it would have to be a reduced dose. Then I would monitor it weekly.....Just my 2 cents.
Since John was never on Cyclo, I'm not very familiar with it but it too can be rough on the Kidneys. It depletes magnesiums. Hopefully others with experience can chime in here. You may need to reduce that also.
Have you considered adding in a probiotic for the digestion? Exjade messes with the environment and since he's had/has C-Diff, his bacteria in his gut is out balance.
IMO, your dad would better off staying off the Exjade until things settle down. The iron is an issue but it's not the critical issue right now.
Lastly, I would consult with a doc who's experienced with AA. Find someone at MD Anderson or contact NIH Dr. Neil Young. At very least, your doctor should be talking to someone.
Hang in there. You're a good advocate for your Dad.
Marlene