Back in September, I wrote about trying a new medication to address my iron overload problem. For the past two years, I had been injecting a slow-infusing Desferal (deferoxamine mesylate) pump into my body six days a week. Each pump took approximately 16 hours to infuse.
I found this medication regime truly cumbersome for reasons I explained in my September column. In August, I reached the end of my tether and spoke to those on my specialist team about alternative medications. I simply couldn’t cope with the “Desferal drain” any longer.
I agreed to a six-week trial of Exjade (deferasirox) instead. I was a bit familiar with this medication, because I had taken it years ago, albeit in a different form. That was not a pleasant experience for me back then, because my liver functions suffered dramatically, and I had to stop taking it.
Needless to say, when it was the only alternative put on the table for me to choose from recently, I was concerned. But in the end, I agreed to switch to Exjade for a short trial period, with close monitoring of my liver functions.
Two months have passed since I started taking Exjade, and so far, it seems to be working. My liver functions seem to be stable and have not gone awry. Aside from the headache of having to travel back and forth to the hospital for frequent blood tests, I feel as though a massive weight has been lifted from my shoulders. I am now permanently free of the Desferal pump and have agreed to take Exjade permanently.
I recently had an MRI to monitor the excess iron floating around my liver. This is something I do annually, because iron overload can sometimes result in excess iron sitting around the liver and, more worryingly, the heart. I have no iron around my heart, but I do have it around my liver, which has been the case for a few years.
My most recent scan showed that I had 10 mg of iron per gram of dry (liver) tissue. To put this in perspective, my scan results last year showed that I had 43 mg of iron per gram of dry (liver) tissue. So, essentially, I have had a whopping 77% decrease in the amount of iron floating around my liver!
The medications needed to manage my iron overload have many side effects, but the two I am most concerned about are deteriorated vision and hearing. I have them both tested annually to ensure that any deterioration is caught as early as possible. I have had both tests in recent weeks, and my results show that both are in fantastic shape!
The past few years have been particularly tumultuous for my health, so I am ecstatic to finally hear some good news. When living with a chronic condition, hearing about declines in our health becomes the norm. At best, stagnancy is good news, as in, “It’s not worsening, so I’m OK.” Hearing that I have had an actual improvement is rare for me, so I’m especially grateful for it.
I felt compelled to share this update to encourage other sickle cell patients or those who may be living with or caring for someone else with adverse health conditions. Things can improve.
The forward plan is to remain on Exjade until further notice, and those on my specialist team are hopeful that my next annual MRI scan will show a decrease in iron levels by at least 50%. I hope this means I will soon be able to remove iron overload from my list of diagnoses.
Note: Sickle Cell Anemia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Anemia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell anemia.
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