Ferriprox-exjade combination therapy

Talking about New Year's Resolutions, mine is to start on Ferriprox-Exjade combination therapy. I have finally reached this conclusion. I'll begin on New Year at the level of ferritin 170 (latest count now) and let's see what will happen.
I am a little afraid, of course, I admit that, as this is a new chelation project not worldwide applied.
However, I think it is worth it because if everything turns out fine, my life quality would be improved. I consider 30 years pumping to be enough, don't you think?

Lena.

Best wishes, Lena. You certainly do deserve a break from the pump.

Best of Luck Lena...

Abbas

30 years is more then enough Lena,wishing you all the best, but why exjade and ferriprox and why not just exjade,since you already have very low ferritin level?

Thank you all guys- Andy and Abbas and Zaini - for your support. 

Zaini,

I choose Ferriprox and Exjade together because I do not trust Exjade alone as a strong chelator.
I know Zainab is on Exjade alone, but I think this is good for her case. She must avoid desferal because of her age and better growth. But this may be for now - she may be turned by her doctors on a combination therapy in the future. From what I have heard, exjade monotherapy is not for long.
Of course, each one of us is a different case and will do what suits him/her best according to doctor's orders.

I personally feel more confident when on combination therapy and I surely prefer Ferriprox to be one of my chelators permanently due to its good effects on heart.

Lena.

Hi Lena, good luck with the Ferriprox-Exjade therapy.
I was on desferal-ferriprox combination but had to stop it because of joint-pains at my hands. It went so far that I could not make a fist anymore. After stopping and prednisone therapy the pain reliefs but have still swollen finger-bones...
Now I'm on Exjade and my ferritin-level is 1200. I'm a bit surprised that you want to do the combination therapy as your ferritin level is so low. I was told that for thal.major the ferritin should not go below 500 as our body is used to a high level.
Andy maybe you know more about this ?
All the best

Hi Flyaway,

There was a short but interesting discussion about what the target should be for ferritin levels, at the recent conference in NYC. Doctors talked about how the goal was once "under 1000" and then "under 500" and now? Well, the consensus is that we really don't know how low it should go but the idea was put forth that "normal" ferritin levels may eventually be the goal, with normal referring to the iron load of non-thals with normal iron loads. I also met Lena's doctor there. She is working to keep her patients at a ferritin level of 100. This has to be done under close supervision but I agree with the idea. Why shouldn't thals try to be as close to normal as possible? More and more, doctors are taking the attitude that with well managed care, thals should strive to be normal. It sounds simple but is actually a major step and I agree there is no reason that a patient in a well managed treatment program should not try to have normal levels in most things. I also agree with Lena's thoughts about combination chelation because each chelator has unique properties and work better in some areas of the body than other chelators. By using a combination, there is a better chance of getting iron out of all organs and tissue throughout the body.

I really hope that people like you and Lena do serve as inspirations to the younger thal patients who may have doubts about their own potential in life. I really think that thals have a very good chance of having a fairly normal lifespan with today's treatment options and that this can only improve with coming developments. Our task is to give these younger patients an honest portrayal of what is possible, and give them the support to see this happen in their lives. Many have grown hearing all the same things you did as a child and teen and we need to make sure we get through to them so they too, can believe in their own potential.

Thank you for your kind wishes, Flyaway.

Andy put it right - in our Thal Unit ferritin level is kept near normal standards. There are people who have 30 or 40 ferritin but they keep on combination chelation therapy. Most of us have clean MRIs but we do not lower our chelation dosages. This way, the MRIs get cleaner year in year out and at the same time we keep our ferritins really low.

Lena.

Hi Andy, thanks for your explanation. I really hope that Lena and myself are giving some aspiration to the young thal. patients. It's so important to be compliant with the chelation therapy, and Lena is a real model also for me. She managed to bring her ferritin-level that low.
Bravo Lena, please keep us updated how your combination therapy is working. I'll keep my fingers crossed for you Best wishes, flyaway

Flyaway,

you make me blush!    for your kind words.

I'll keep you all posted - well, I really need your positive attitude, too!

All the best to you, too.

Lena.

I think it is time for a new trial. We know about the benefit of combination desferal and ferriprox. But know we need to know more about exjade-ferriprox combination. I ask myself why it takes so long to make clinical trials about this drugs combination. Wish you the best, Lena.

An interesting point on this topic is that there is really nothing to prevent your doctor from prescribing a combination that has not yet gone through trials. I've known several people who have used the desferal/Exjade combo, and this began shortly after the approval of Exjade. The doctors weighed the needs of the patients against the absence of trials and decided the trials would be in these patients who needed added chelation. Not all doctors are willing to wait, as the patient's lives are deemed more important than procedure. I think that as long as this is done under a doctor's supervision, that it is acceptable to use a combination that has not yet been through trials.

Gabri,

thanks a lot. Were not the same questions when the ferriprox-desferal combo first started?
I think there were. Yet, some doctors proceeded to apply that combo and look how beneficial it has been proved to be. It's the same thing with ferriprox-exjade combination therapy.

Andy,

I have realised that it depends on the doctor if he decides or not to proceed to any new therapy. It has to do with his character, his strong will to test new methods, his ambition. There are doctors, on the contrary, who are afraid of being responsible for any new start. They are conservative due to their character and do not pioneer anything new. 
As long as the patient's health is not at stake because of every new method, there is no need to sit still and wait for the clinical trials which may never happen. And of course, new methods are not applied only in cases of patients whose lives are in danger. My case is not among them. Iron does not threaten my life, however I am willing to start on this new combo because there is another very important factor to take into consideration: that of my life quality improvement.

Good luck my dear friend Lena. Keep us up to date.

Thank you Dore.
I will keep you posted.

Lena.