Questions about Exjade

I will be traveling to Oakland next week (Oct 7th) and I will be meeting with the group of doctors and technicians concerned with Exjade, chelation, L1 and the SQUID test.  My meeting will be brief as they are simply giving me more Exjade and following up on our experience so far. 

If anyone has question relating to these topics that I can ask on your behalf please post them here for me or PM them to me.  Time permitting, I will do my best to get answers for you. 

Best,
Sharmin

I am sure they are going to dodge this question, but I would like to know if they even say a distant Yes when taking Exjade and L1 for Iron Chelation. L1 has been well known for it's effect on removing Iron from the heart and I would like to know, how the doctor's think of L1 now that Exjade has been in the market.

Hi Sis , while i was reading the posts i found this one in an old post .. its sent by narendra ... thanx  to narendra that he raised a good question .. sis, i think it should be asked to those doctors .. bcoze if answer of this question is YES then it will b great  .. 1 oral chelator for the heart and second for the liver iron chelation ... it will play a good role to chelate iron .. soo i think you may ask this question to the panel of doctor  , you're going to meet ...... please read this quote ..

With the availability of Exjade (Asunra) in India and Pakistan, where Kelfer has been a life saver for years, I am sure this question is going to pop up.

Can both (Exjade and L1) drugs be taken together similar to how Desferal and Kelfer are recommended?
As most of us have heard, L1 is better in chelating Iron from Heart and Exjade (am I right?) chelates Iron from the Liver

Those who can, could you guys ask this question to the doctors who are treating you and see what they have to say 

Take care
Umair

I will definitely try to get an answer to this question. 

During my July visit, I inquired about L1 and I was told that although in some cases they do recommend L1 - especially because of its effectiveness in removal of iron from the heart - they prefer exjade because L1 has many more possible and serious side effects.  They said that a lot more blood tests and follow up is necessary.  They said that in our case Exjade/desferal is best. 

I was also told that while L1 may be most effective at removing iron from the heart -  Exjade and desferal when chelating iron from the body DO chelate iron from the heart as well.  The decision regarding whether to use L1 or not is usually based on how much iron is in the heart - if it is excessively high and is affecting heart function then L1 is preferred.  If it is not as severe then Exjade or Exjade/dfo is preferred. 

I believe that an Exjade/L1 study was started but a sufficient number of candidates were not available and therefore it was halted.  I will check on that for you. 

My personal belief is that Exjade removes iron from all organs which is why a high ferritin level is seen after using Exjade.  And when desferal is used with Exjade - desferal quickens the pace at which iron (which the Exjade removes from the organs) is eliminated from the body - therefore the high SF does not occur.  I don't know if L1 would do this when used in conjunction with Exjade.  Again, I am sure the team has a view on this. 

If I am not able to see the specialists this time I will be sure to get the information during my visit in January/February because I will have more time to meet with the doctors.   

Sharmin

I leave tomorrow morning - Narendra & Umair,  if I have an opportunity to meet with the group I will ask your question.
If anyone else has an exjade/chelation related question feel free to post it tonight - I will try to check my mail a few times before I leave. 

I will also login while on my trip for any other questions or concerns - feel free also to PM me:) 

Take care,

Sharmin

I know they have mentioned IP6 is good for using it as a supplemental to help in chelation with Exjade. Does it also be a good candidate for use with Kelfer (L1)?

Good luck with your trip and we hope you hear more good news on your son's health. Moms like you are great for any kid.

Bon Voyage Sharmin 

Narendra,

My daughter is on L1 and she is also taking IP6.It has definitely helped her.

Zaini.

Thanks everyone.  I am here - did a little shopping - helped me relax he he. 

Zaini, is Zainab on desferal as well?  or just L1? 

Please give the little ones a big hug from auntie Sharmin 

She is on combination therapy,L1 and desferal both .

Enjoy shopping .

Zaini.

Hi guys - I had a quick meeting with a member of the technician.   Narendra - he told me that he is not aware of any studies combining Exjade and L1.  He says that the two drugs have not been considered together at this center to date, as far as he knows.

He says that a study using L1 and desferal has recently been completed, he said that it was wrapped up early and results should be documented and available soon. 

He also said that the exjade/desferal study seems to be going quite well, the results have been good and so far no adverse events have been noted.

I hope that this answers your question,

Sharmin

I did bring this question up about combination therapy with Exjade and L1 with Dr Wood, and as I suspected, it is very unlikely that a trial will be run using both, as the concern about compounding side effects in the liver is great. The combination of L1 and desferal is still king, but neither drug can provide the same chelation effect on its own. Information about Exjade is slowly trickling in, and there is some early indication that it does have some positive effect on the T2* test for the heart, but we have to be patient as the drug is studied over time. There is also some mention of using desferal and Exjade together, when you talk to the doctors in person, but again, it will be some time before extensive study is done.