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I have very high ferritin levels and I have chelation therapy. This high level of ferritin is the result of having blood transfusions (2 bags) every 4 weeks. I have myelodysplasia (low or immature red blood cells). I started taking deferasirox, known as Jadenu to me,on 6th June this year and felt some pain around abdomen. I have read that your body gets used to the tablets after awhile and that seems to be the case. I also have noticed that if I have the tablets after breakfast and not before helps. I have blood tests every 4 weeks to monitor health of liver, kidneys etc. I am a first time contributor. Thanks for having me on.
Replies to "I have very high ferritin levels and I have chelation therapy. This high level of ferritin..."
I was diagnosed officially in March 2022 after having a bone marrow biopsy but for the year before it was known that I had low haemoglobin levels. I live in Sydney, Australia and unfortunately there is no other treatment available. There is a tablet that trials have had great success with. It is approved by the Therapeutic Goods Association but is not on the PBS whereby costs are minimised. Government hasn’t approved it yet. Disappointing.
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Thank you so much for taking the time to share your experience with chelation for your high ferritin levels, @wakeley. I know your information will be very helpful to @sandy150bates who is just beginning this journey.
How long ago were you diagnosed with MDS? Are you on any other therapy for this besides having monthly blood transfusions?