Thalassemia Patients and Friends

Discussion Forums => Iron Chelation Corner => Topic started by: §ãJ¡Ð ساجد on May 18, 2007, 12:15:25 PM

Title: Ferritin going up with Exjade.
Post by: §ãJ¡Ð ساجد on May 18, 2007, 12:15:25 PM

Hi everyone,

I know this question has already been answered several times but I can't seem to find them and the search returns many unrelated results.

I have been asked this question by one of our members, Asim; whose friends have been using Exjade for a short period of time; that, their S.F are starting to go up with the use of Exjade. Their doctors have told them to stop Desferal and the increase in S.F is concerning them.

Their S.F is not too high and are on dose 1500 mg divided in three doses in a day. (If I heard it correctly from my friend :biggrin )

Can anyone tell me how long it takes for the levels to come down and what are the factors that might effect the process; e.g iron load in organs or high/low S.F in blood?

Take care, Peace!

Title: Re: Ferritin going up with Exjade.
Post by: Andy Battaglia on May 18, 2007, 03:12:33 PM

I have heard several times that the reason this happens is because exjade is removing iron from the organs and tissue and then it appears in the ferritin. This should be just temporary and the length of time would be related to the amount of iron overload that exists in the patient. One other factor is that the initial dosage is often low, in order to give the body time to adjust to the new drug.

Many doctors are hesitant to allow patients to use both exjade and desferal but I do know patients in the US (Danielle and Masuma) who use both drugs with no problems. If I were to advise these other doctors I would suggest continuing use of desferal at least twice weekly until ferritin levels begin to drop. However, since there haven't been any studies conducted on the use of the two drugs together, most doctors would be hesitant to prescribe this. My response is if the patient already has seriously high ferritin levels, it is definitely worth the risk to be using both drugs.

Title: Re: Ferritin going up with Exjade.
Post by: §ãJ¡Ð ساجد on May 18, 2007, 03:31:28 PM

Hi Buddy!

I guess their SF were fairly low like Asim told me and by using Exjade, the Iron got released from other tissues and increased the S.F reading in their blood that alarmed them. Furthermore the low dose and no Desferal could have also contributed to increase in S.F levels as they are teens and have higher blood transfusions than kids. Thus the balance of incoming iron and outgoing Iron could have been disturbed. My thoughts really! I don't advice them to start Desferal along without the consent of their doctor, but they should really ask about the increase in dosage if the S.F trend continues to increase in few months.

Thanks again for the valuable information Andy :happyyes

Take care, Peace!

Title: Re: Ferritin going up with Exjade.
Post by: Andy Battaglia on May 18, 2007, 03:36:54 PM

I would just like to add that serum ferritin tests do not show tissue iron concentrations and even though ferritin may seem to be in check, organ iron may be much higher. This is why regular MRI's are recommended to check iron concentrations. Also, the patients should make sure that they are eventually given the maximum dosage of exjade for their body weight.

Title: Re: Ferritin going up with Exjade.
Post by: Zaini on May 21, 2007, 06:30:18 PM

Hi Andy,

Once again or shall i say as usual i was surprised to read that thals should have regular MRI, no doc here suggested it, zainab is on transfusion since last three years and her iron last checked a couple of months ago was 2400,should she have an MRI?one more question, is ferriprox only is enough for iron chelation?or it is targeted to unload iron only from heart? and sajid exjade i believe is not available here in Pakistan, how come Asim'e friends are using it?or may be they are are living abroad?

ZAINI.

Title: Re: Ferritin going up with Exjade.
Post by: Andy Battaglia on May 21, 2007, 07:17:39 PM

Previously liver biopsy was used and is still often used to get a more accurate reading of organ iron concentration. MRI is now used because it is non-invasive and requires no tissue removal. I don't know at what age MRI is first recommended, but I seem to recall canadian family having one done on their young child or preparing for one. It is not surprising that it isn't routine in Pakistan considering the state of the health care system there.

Ferriprox chelates iron throughout the body and is more effective at removing heart iron than desferal. The best chelation therapy right now is a combination of desferal and ferriprox. For example, ferriprox taken 5-7 days per week and desferal taken 2-4 days per week, depending on the iron load of the patient. Ferrirprox is an effective chelator by itself but the addition of desferal does improve chelation and also lifespan of the patients. It is too early to assess the effect of exjade as a chelator compared to the other drugs.

I don't think exjade is officially available in Pakistan, so if it is being used it may be black market, as ferriprox was until recently.

Title: Re: Ferritin going up with Exjade.
Post by: Canadian_Family on May 22, 2007, 01:49:07 AM

Hi Andy,

Yes you are right we had Ferriscan done on April 16, 2007 and we are hoping to get results on May 24, 2007. I will post the details as soon as they are available. My daughter was recommended as a test case at the age of 4 and she did fine. It is now recommended for other children starting from age 4 and beyond.

Regards

Title: Re: Ferritin going up with Exjade.
Post by: §ãJ¡Ð ساجد on May 22, 2007, 05:33:18 AM

Quote from: ZAINI on May 21, 2007, 06:30:18 PM

sajid exjade i believe is not available here in Pakistan, how come Asim'e friends are using it?or may be they are are living abroad?

ZAINI.

Hi Zaini,

Yes, it's not available in the market of Pakistan but you can get it either from UAE via credit card (if it has enough credit limit to buy a luxury car :wink) or from other countries like U.K or U.S if you are visiting there and get a prescription from a doctor (or ask your relatives if possible)

Take care, Peace!

Title: Re: Ferritin going up with Exjade.
Post by: Nur on June 02, 2007, 02:22:58 PM

hi,

I have never been tested by MRI. should i do it? What tests should i do?

Is it painful  ???

Title: Re: Ferritin going up with Exjade.
Post by: §ãJ¡Ð ساجد on June 02, 2007, 04:00:14 PM

Hi Nur,

MRI (Magnetic Resonance Imaging) is a pain less procedure. You just have to lie down still while the machine slides you in and scans your body using magnetic waves.

A FerriScan is basically also an MRI just that the scanned data is sent to FerriScan HQ where they interpret the Iron concentration from it.

(http://www.chipple.net/mt/archives/20050616mri.jpg)

Take care, Peace!

Title: Re: Ferritin going up with Exjade.
Post by: Andy Battaglia on June 02, 2007, 05:14:47 PM

If your hospital has an MRI machine it is very easy to set it up to work with ferriscan. You can request that your hospital contact Resonance Health and get the details on what is involved.

http://www.resonancehealth.com/rh_home.jsp

Tel:
+61 (0) 8 9286 5300

Fax:
+61 (0) 8 9286 5399

Tel:
1300 554 784 (Australian residents only)

Tel:
1 866 891 8245 (Toll Free for US residents only)

Email:
General Enquiries Email:
info@ferriscan.com

MRI Centre Support:
   
support@ferriscan.com

 
   

 

Corporate Head Office 
Address:
   

Level 1, 216 Stirling Highway
Claremont, Perth 6010
WA Australia
 

Postal Address:
   

PO Box 1135
Nedlands, Perth 6909
WA Australia

Title: Re: Ferritin going up with Exjade.
Post by: Nur on June 03, 2007, 02:27:54 AM

Thanks for the explaination Sajid . I don't have to worry much then.

I dont think that the MRI here have ferriscan. I'll try and ask my doctor about it.



Nur

Title: Re: Ferritin going up with Exjade.
Post by: Nur on June 11, 2007, 07:56:10 AM

hi,

I am on xjade. the first time i checked my ferritin after taking exjade it was so high. I am so worried too but 3 weeks later i checked again and it went down. I am relieved to see the result and hope it will continue to come down.

So i hope for those who are taking xjade and had their ferritin go up, i hope you guys are doing the same too.

 :clap

Title: Re: Ferritin going up with Exjade.
Post by: asim_aziz on June 25, 2007, 07:44:05 AM

thanks for the help guys i really apreciate it... @zaini they go to uk and abroad very often so geting exjade isnt a problem for them