Is there something I should worry about?

Hello Everyone,

Nick from SW England here.  I've been on exjade for just over 9 months now.  The ferritin intially fell from a baseline of 920 to 614, but has been steadily increasing to pick at 955 last month (Feb) this month's sample still being checked.

My original dose is 625mg based on a mg/kg at 10mg/kg.  Today my consultant told me to increase the dose to 1000mg, which I'm fine about. 

My big concern has been over the last two months the proteinuria test has been positive!  Last month they sent it to the lab but there was no clear indication of what has led to this. 

This morning when I went for a crossmatch, again the proteinuria test showed a positive reading and there was blood in the urine.  I know this drug can have an effect on the kidneys when I have reviewed the literature.  I am a little concerned now that I'm going to start on a higher dosage of exjade that this might cause more potential problems.

My consultant did ask me if I've noticed the colour of the urine change.  I could only reply that this colour (slight reddish similar to desferel) happened first thing in the morning and then gradually during the day the colour I feel is normal (straw).  I could not remember when this started as my urine seems to have been always a darker colour.

My consultant has said they will monitor this in particular due the change of dosage.  Its quite likely that its to do with my bilarubin or there could be an infection.  The urine going to be checked again possibly on Friday (when I hooked upto my blood).

Do I really need to worry about this?  Or I'm just getting paranoid!


Many thanks,


Nick

Nick,

Protein in the urine is a common side effect of Exjade. From http://www.drugs.com/pro/exjade.html

In clinical studies, urine protein was measured monthly. Intermittent proteinuria (urine protein/creatinine ratio >0.6 mg/mg) occurred in 18.6% of Exjade-treated patients compared to 7.2% of deferoxamine-treated patients in Study 1. Although no patients were discontinued from Exjade in clinical studies up to 1 year due to proteinuria, monthly monitoring is recommended. The mechanism and clinical significance of the proteinuria are uncertain.

Since Exjade is still a relatively new drug, the long term implications, if any, are not known. Blood in the urine is also noted but the incidence rate is not known, nor is the meaning. As you said, there could be some other cause not related to Exjade use. Basically, what this means is that you need to continue to monitor the same things that have been monitored. Any major changes in measured levels will usually result in discontinuing Exjade at least short term. I don't know if you'll see any change in any kidney levels with a higher dose of Exjade but you will be monitored at least monthly so any changes will be seen quickly. I do think your dose is quite low and and not surprised you've seen some increase in ferritin. It's good to be cautious but don't let it keep you from using meds that you need. If the higher dose causes any problems, you'll probably be switched back to desferal temporarily.

Many thanks Andy.

I forgot to mention that glucose was noticed within the urine.  Is this another factor possibly of exjade?

Nick

Nick,

Glucose in the urine is one of the known side effects of Exjade in some patients. Along with protein in the urine, it is a reason some patients have to stop Exjade, but this depends on the levels found. Do you have any prior history of kidney problems? That is the main question at this point. If you have a prior history, then these levels need to be very closely monitored. If not, then see what happens with your next test results. Many patients do test for these things with Exjade use but so far have had no kidney function problems. Patients with prior kidney or liver problems have to be very aware of this, as do their doctors, as the only deaths associated with Exjade use have been in patients with prior histories of kidney and liver problems.

My suggestion would be to bump up your current dose as the doctor recommended and watch the test levels. Some patients will have no choice but to resume desferal use if the kidney and liver tests regularly show high levels.

Andy,

Thanks once again for your comments.  I have'nt had any history of kidney problems other than a couple of years ago a small cyst was picked up on an MRI Scan.  A subsequent ultra-sound revealed that this was common, the radiologist stated it was due mainly to aging.  Unfortunately, there has also been kidney problems in my family.  My father was diagnosed with cancer in the kidney three years ago and had to have it removed.

Additionally, I was also cursed with Hep C but was able to respond to combination treatment of interferon and ribavon (Im not sure how its spelt!) and have been negative since 2000 (there is a god!).

Anyway, I have been told that my levels will be monitored very carefully over the next month or so and I will let you know.  Hopefully, there won't be a return to the days of desferel!

Nick