[Marlene]

Mola-teca,

Just wanted share some experiences in the off-chance it could be helpful.

John eventually had issues with Exjade and had to stop. When he started, it was at a reduced dose of 500MG for the first 3 months, then up to 750 mg. During this time, he would have to take a break from it about every 3-4 weeks because it caused nausea. A year later, he upped his dose 1000mg and within one week, his creatinine increased to 1.5. He stopped it and took about one month for his creatinine to return to normal. He then started up again at a 750mg but his creatinine started to climb again. So he stopped it completely.

For many, stopping it until things return to normal, and then restarting it can resolve the issue. For your mom, it may be the cyclo causing the rise. There would be little risk in stopping the Exjade to see which med is the culprit. Unfortunately, you have the added complication of dealing with a doctor that is not very open to discussion. We were already 4 years out of treatment by then and had much more experience dealing with all the things this disease throws at you. Exjade was new and one of those medicines that we felt comfortable playing with since it wouldn't alter the course of the disease, like causing a relapse if stopped.

When it came to explaining or discussing Aplastic Anemia, we ran into the same problem of the lack of understanding of the disease. So we started to use more charged language to get to the point quicker. Like...catastrophic bone marrow failure called Aplastic Anemia. When you lead with Aplastic Anemia, many think you just need more iron. A common misconception. We were amazed at how many in the medical field did not take or understand the precautions necessary when dealing with someone with this disease.

For me, the stress and worry didn't get better. I'm very good at both unfortunately. But my handling of it did. Over time, my confidence grew by the experience itself, understanding that the body has a driving desire to heal and seeing how well John could recover from setbacks and other issues. It's still scary as ****.