Kidney issues with Exjade

Hi everyone,
My 5 year old daughter has been taking 500 mg of Exjade (dosage split twice a day thanks to Andy).  Her ferritin has been ranging from 4100-5300.  She will have a ferriscan in the upcoming months. 
I am a bit concerned that her urine protein was determined to be high at 35.0. Micro albumin (random) was also high at 59.5.  I know Exjade can cause serious kidney issues, and asked for a repeat urinalysis.  How alarming are these proteins in her urine?  Urine creatinine was normal at 51.4. It looks like serum creatinine is normal at .3.
Thanks so much
Cindy

Hi Cindy,

I would suggest making sure she is well hydrated right before the test. This will give you a more accurate reading. These levels are a bit high, but only monitoring is suggested at this range. Repeat testing is always recommended and hydration is essential to determine the actual levels. With Exjade in particular, staying well hydrated at all times seems to be a key to success.

Hi Andy,

As this topic is already going on, I thought let me ask. When I used to take defriprone (Kelfer by Cipla) 4 years back, my urine color used to be red (which listed that it's throwing iron out!) but with Asunra/Exjade, it's not the case. The urine color is as normal as of anyone else. Is this normal?

-Pratik.

Yes, because iron is removed mostly through the feces with Exjade, the urine color won't change.

Thanks Andy.  Interesting about the hydration.  She is NOT a big drinker at all.  Maybe 16-20 oz of fluid a day.  I will push more fluids for her.
Cindy

I think that hydration is the most overlooked aspect of taking Exjade, because it affects the kidneys, Keeping the kidneys well irrigated may be the single most important thing that can be done to avoid kidney side effects with Exjade. Patients using chelators should drink plenty of water.

Andy, does that mean the iron is not at all, or if not all, only getting out in small amount via urine with Exjade? If so, I mean I can't expect for a quick iron reduction as feces is quite low and less in amount when compared to the amount of the time we urinate throughout the day.

Exjade removes iron mostly through feces. I would suggest looking at your diet. First, get plenty of fluids, especially water. Then make sure your diet is high in natural fiber. Fruits, vegetables, nuts, whole grains and beans. Eliminate junk food as much as possible.

And to everyone, hydration cannot be stressed enough. Chelators affect the organs and you must stay well hydrated both to protect the organs and also to help eliminate iron.

Hi Andy, fluids is not a problem for me. I am a die hard lover of water myself. I drink about 20 full big bottles of water a day (yeah, haha). I love fruits, I take them in adequate amount as well as some type of beans and all. And no, am not a junk food eater (also due to the fact that I posses diabetes, I don't eat junk food other than when we got to hotels every 1 or 2 months, but that also I eat bread of fine, not other things like Pizzas and all because I hate pizzas and all that stuff).

Hi,
My son had a ferritin of around 500 three months ago. For two months after that ferritin was not tested but exjade was continued at 375mg for 16.5 kg weight. A few days ago ferritin was 330 but some other results indicated kidney problems. X ray turned out fine so not stones. Urine test showed blood and protein in urine. Treated with Suprax antibiotic b/c said might be cystitis. I am wondering if this a side effect of exjade. Before when ferritin went below 500 exjade dose was reduced to 250 and later 125mg until ferritin was around 700 again at which time exjade increased to 250 and when ferritin close to 1000 to 375mg exjade was given.

I have read that when ferritin is below 500 exjade should be stopped. Some posters think chelation should never stop so iron doesn't accumulate in organs. I guess they think reduction is enough. Are my sons problems a result of not reducing/ stopping exjade in time? Should I insist on ferritin testing each visit? Is reducing better or stopping altogether? Right now he has been instructed to not take any exjade for 3 weeks.

Confused and worried,
Zahra

Hi Zahra,

This is another good reason to stop exjade if ferritin levels falls below 500. Children are very suspectible to exjade side effects. In Canada, no exjade if ferritin is below 500 (exjade holiday for 2-3 months). Why stress your kidneys if the ferritin is already low, specially in children. Also, children cannot possibly take enough amount of water to dilute the side effects of exjade and this causes elevated protien in the urine.

However, some countries continues to give exjade even below 500, I think every country has their own protocol.

Dose reduction is necessary at low ferritin levels. I agree with ceasing the drug for a few weeks to give the organs a break. It may be prudent to begin with half a dose when you start it up again.

Hi Andy,

Few weeks break followed by reduced dose seems good. However, our doctor disagreed with it. I would agree with this approach though.

Hi Andy,
My sons ferritin is 303 today. The doctor suggested reducing from 375 to 250. I mentioned last times problems so she said its ok to take a break.
His next appointment is in two weeks because his Hb was 8.7 and the blood unit was also small.
Is it still your opinion that its ok to stop exjade for 2 weeks? Or is it better to reduce to say 125?
Zahra

I'd still say take at least a one week break and then resume at a low dose and give the kidneys a short break. His ferritin is low and he can afford a short break. I think his kidneys will benefit.