Exjade/desferal and color of the urine

Andy,

As you know my son is using desferal/exjade in combination (he began getting the higher dose of exjade (625mg) on Sunday).  It used to be that his urine would be red in the morning, after a night of desferal.  He removes his desferal at about 7:30am before going to school - and lately I am noticing that when he comes home from school at 4:30pm his urine is quite red (same color as it usually is in the morning after desferal). 

This did not used to happen before, his urine would only be red in the morning, but by the time he would pee the second time in the day his urine would return to a more pale color.  He does drink water and milk regularly during the day so he is not likely to be dehydrated.  Should I be concerned about this? 

Thank you,

Sharmin

I wouldn't be concerned. I think this only verifies what we've said for a long time about Exjade. It is better at removing iron from tissue and desferal is better at removing free iron from the blood. With the higher dose of Exjade you can expect a higher amount of iron to be chelated from tissue for awhile and this will show up in his urine as the desferal removes it. Only about 1/3 of the iron chelated by desferal shows up in urine in a 12 hour period, while the rest is excreted more slowly through urine and feces over a longer period. I think what you are seeing is that the Exjade is feeing up more iron and the noticeable effect of desferal chelation lasts longer because there is now more free iron for the desferal to remove.

You can check with the doctors and I think they will also be happy to hear that there is more evidence that a higher amount of iron is being chelated due to this combination. This is probably valuable information for the trial. And great information about little A. I predict his next liver scan will show much less iron concentration.

Thanks Andy, 

I will let them know.  I'm glad that more iron is being excreted.  I have been keeping an eye on his urine, but it is getting really difficult now that he is getting older - he's been telling me "MOM! do you mind I'm trying to pee! " 

They will be doing a urine screen tomorrow, maybe they'll see the iron in his urine as well. 

Thanks again Andy,

Sharmin 

Hi Sharmin
as Andy said the red colore of his urine that's mean he take benefite from the desferal and exjade coze be doctod say to me if urine colore not be red that's mean you dont take benefite of your desferal and the colore if your san's urine it's be red that's good.
I want to ask you your san take desferal and exjane in same time or same days he take desferal and other days take exjade, coze I want to start with exjade with desferal together

and thank you

qiji

Hi Qiji,

Yes, he takes both of them and 5 days of the week he gets both desferal and exjade - but I will stress again it is very closely monitored by  our doctor and an entire team of doctors and techs in Oakland.  Please see my post for more details:

http://www.thalassemiapatientsandfriends.com/index.php?topic=2335.0

I am very happy to answer any other questions you may have   Chelation is very very important - but it must be done right to get results. 

Best,
Sharmin

Hi all

now I use Exjade, I used it before 2 days I take it in the morning but the urine color didn't change (don't be red ) and I know it must change, did  mean it don't working ??

best regards

Exjade is mostly excreted through the feces so you won't see a change in urine color.

Qiji,

I just wanted to add that if you are using exjade and desferal (and if the desferal is infused for more than 10hrs, preferribly 12 hours) you will notice a significantly red color in your urine.  If you take vitamin C 1/2 hour after desferal infusion begins the red color of the urine will be even more pronounced.   

Exjade will do a great job of removing iron from the tissue and cells of the body, because it can actually get into skin cells and tissue.  If you are using exjade alone you may notice a rise in serum ferritin for quite some time - as the iron is being removed from the tissue and into the plasma.  If you are using exjade/desferal combination (as you mentioned that your were) - you will probably not see the rise in ferritin (provided that you use the desferal 3 - 5 times a week) because the desferal mops up the iron from the plasma and releases it in the urine.  Using desferal with exjade during the first few months, when exjade is releasing large stores of iron from the body (once research has established its saftely and effectiveness) may be a great idea.  Once the organs have been "cleaned out" exjade can probably be used on its own without spiking the serum ferritin. 

Best of luck - and keep getting the regular blood and urine tests - I think you will see great benefits very soon. 


As an aside, I have heard a few people say that they are waiting for the ferritins to go below 1000 before starting exjade - just remember that the increase in serum ferritin after begining exjade does not reflect the initial ferritin - rather it reflects how much iron overload exists in the organs - and the increase in ferritin will be the iron removed from the organs.  Therefore it will not make a difference if the SF to begin with is 900 or 1500 - the SF value after begining exjade may go up to the same level. 

Zaini, in your case, little Zainab has been taking L1/desferal combination - L1 removes iron from tissue as well - and desferal removes it from the serum.  For this reason you may notice a lot less elevation (if any) in serum ferritin if Zainiab begins exjade.  Even if there is some elevation it should clear soon because she has had much of her tissue iron removed with the L1. 

Also, we were told in Oakland that exjade is considered safer than L1 - and since our little Zainab has tolerated L1 so well - I am hopeful that she will tolerate Exjade very well.  Little A so far had done very well and the change in his skin color is undescribable so I will send you a before and after picture.   We just make sure he drinks water regularily - we have him drink quite a bit while he is at home - before leaving school.  We send a water bottle with him and let the teacher know that he should take sips throughout the day and then we continue with this when he gets home.  It is not drastic, I think that the additional water is good for him anyway.  Even on the days that he did not drink much water (before we were aware of the necessity of water when using exjade) he seemed to do quite well.    I hope that this is reassuring to you when you decide to begin using exjade.  Hugs and kisses to my beautiful princess 

Sharmin

HI all

Thank you Andy that you say make me happy because I take exjade for 2 days and urine color don't change that make me boring,and I must censored feces,thank you my friend

Sharmin
I take exjade every day and also take desferal every day 4 vial 12 hur and I take vitamin C 1/2 after desferal infusion begins.

how much of time exjade need to appear force.

and thank you again to your efforts.

Qiji

Thanks Sharmin,

I hope everything will go well when we'll start Asunra,which might be in couple of months.

Zaini.

Exjade is mostly excreted through the feces so you won't see a change in urine color.

Totally agree, please be regular.

Qiji,

That is perfect - You are taking optimal doses of the two drugs and you will surely see benefits within a short time.  Please keep us posted on your progress.  Please also be sure to note any changes to you physician - in all likihood everything will go very well.
Best of luck.

Zaini,

I wish you the best whenever you begin with the exjade.  I hope that some of your fears are being alleviated.  It is always scary beginning something new. 

Sharmin