Ferriprox-exjade combination therapy

I think it's time to open this new topic concerning ferriprox-exjade combination therapy. I remember Andy was extremely interested on this subject and now I have some more info on it.

During my last transfusion day I learned that some more patients in my Unit are on a ferriprox-exjade combination therapy and to tell you the truth I start  thinking  about  it myself.
Of course, I hesitate a bit. I guess I'll have to search it a little first as far as the side effects on kidneys are concerned and because this comb is highly rare. I talked to a girl who is on it and she is doing well, her ferritin has dropped and she -up to now- has no side effects at all. Let's see how it will go on.

Lena.

Lena,

Yes, I am very interested in this combination. What I found at the Singapore conference was that doctors were very reluctant to even think about trying the combo because both drugs can have adverse effects on the kidneys and liver. However, this thinking is not the result of any trials, so no one really knows what to expect. I do think that if it is to be tried, that it should be first tested on patients, such as yourself, who have their iron load under control and who also have no pre-existing problems with these organs. Once safety and efficacy is established in low ferritin patients, I think trials could be expanded to those with higher ferritin levels as long as they do not have any serious problems with these organs.

I would not suggest ANY patient try this combo without being under a doctor's regular supervision.

I am also really really interested in this combination,but sadly,doctors here aren't even allowing patients combination of exjade and desferal,let alone exjade and ferriprox  i don't know how many people here on our forum can start this combo with their doctor's permission,if we can have a study on that,keeping track of side effects and positive outcomes,that would be great.

Zaini.

Just a brief new entry:

an adult  thal-major  on ferriprox-exjade combi has succeeded in maintaining her sf, for almost one year now, under 100. No side effects.

Lena.

Lena ,
Wow,,,,, Super good NEWS... its a big step towards a good and easy chelation treatment... i m reallly very happy to hear this NEWS ... may this study will get approval soon and doctors around the world will adopt it ....  its really a big succes and it will benefit to all thals .. Thanx a bunch for sharing this very important ifo with us ... i hope you'll keep sharing useful n important info with all of us ...

Best Rgerads
Tak Care
Umair

That is really good to hear!  I will try to get more info about this in Oakland. 

Sharmin

Lena,

Thanks for the update.

I really wish Ferrirpox would be made readily available to patients in the US. Perhaps if American patients were given the opportunity to protect their hearts with Ferriprox I would not keep hearing bad news like I did today about another young American patient succumbing to heart failure.

Andy,

Sorry to hear about that patient,how old was he or she?

Sharmin,

Definitely add this matter to your list of questions,lets see what they have to say after they hear about what lena said.

Zaini.

Andy,

I am so sorry to hear that!  I hope that L1 is available to patients soon.

Sharmin

I am very interested in that! Thanks for sharing, Lena! 

Sharmin,

is there any news on this from Oakland?

Another young girl of 12 I know has been on this combination for almost a year now and she keeps her fe at 26! Amazing, isn't it? The only side effect she had - but now she is ok - came from exjade and was an instant rise in her transaminases- and when she stopped it for a while, everything came back to normal and she went on with ferriprox-exjade combi.
I think the knowledge will come only when trials are in order.

Lena,

Thanks for the update,i wish doctors would research into that as it seems to be the best combination ever  .

Zaini.

Lena,

Is there any more information on exjade/L1 combination?  This would be great for adults and children alike.  Combination therapy is really ideal, and this combination therapy would be easier to comply to.  

I am really starting to believe for many reasons, young children benefit from starting on an oral chelator.  Not only because of the sub Q needles, but because of the effects on bones.  There is much evidence indicating that children on desferal before the age of 7 are smaller in stature as compare to those who were not.  Of course iron overload also contributes to short stature - and many many negative effects - therefore finding chelation methods that are easier on the bones and growth is ideal.  

If this combination can avoid some of the adverse effects of desferal on growth and yet be able to maintain iron levels below 100 - children having such treatment can expect to grow very similarly to other children.  

Again, I hope that L1 will be approved for use in North America soon - and that clinics here can begin investigating the use of this combination soon. 

Sharmin

Sharmin,

 We are testing that in our Thalassemia Unit. Results are to be shown in the near future. It surely is a fresh approach, tested nowhere else. Its success would be a great step for thals, although there are contradictions  saying there is no protocol yet concerning this. If you ask me, same contradictions had been stated when  desferal-ferriprox combination therapy was first tried. But thank God, they were not followed and look where we are now.
I'll surely keep you posted on this.

Lena.

That would be a dream combination life would be much more easier for future thals.

Zaini.