Ferriprox-exjade combination therapy

A question here:

What about Exjade and blood thinners?
Is there any danger when on both?

Lena.

The only mention relating to this is

Gastrointestinal irritation (ulcer, bleeding) may occur during Exjade
treatment. Use caution in patients who are taking Exjade in combination
with drugs that have known ulcerogenic or hemorrhagic potential, such
as NSAIDs, corticosteroids, oral bisphosphonates, or anticoagulants.

This would apply to certain prescription drugs that have known serious side effects. This would not apply to vitamin E or aspirin.

Thank you, Andy. That makes me at ease, cause aspirin was what I had in mind. You see, because of spleenectomy I take a drug named "salospir" which is really an aspirin.

Lena.

After reaching a low ferritin level (68) my idea is to stop exjade - too much risk... what for,  really ?
 I'll continue with ferriprox alone and...see what happens.

Lena.

Lena,

I think it's a good idea to use just Ferriprox at this point. I think there are too many unknowns about long term Exjade use to justify using it when your ferritin is so low. The once per week chelator would be ideal for those with low ferritin...if it was ever to get funding and make it to the market.

Thank you, Andy. I have contemplated on this for long and I have reached this decision. What for, really? so much risk for what? I hope I can maintain the low ferritin level with ferriprox alone. If not, I will reconsider the case but I think I will not return to exjade at all. "Value for money" or "no value for money"? I think the second one.

Thanks again. I always appreciate your opinion.

Lena.

Lena,

I realize the thalassemia community has been very high on Exjade, but more and more I have my doubts about its long term prospects. I also realize that Novartis has had a large role in shaping public opinion of the drug. I do have many doubts and while I think Exjade is a good choice for many patients, I don't think it can be looked at as a lifelong drug. Alternatives are needed and even though there are currently three chelators, it is still not sufficient.

I know what you mean, Andy.
If you ask me I consider exjade to be a failure and much too risky.I was very reluctant at first to state my mind openly here but since you mention it, I'll second that. For me, desferal and ferriprox is the top combination - fast, safe, with good results.That's that.

Lena.

Andy, Lena

What are your concerns about exjade, why do you think it is not a life long?? Isn't ferriprox and desferal have their side effects too???

Should normal kidney and liver functions be the criteria for deciding whether the chelator is working safe for the patient or not

manal

Manal,

First, I should mention what I have said many times. No one should plan on using the same chelator for a life time because all chelators have long term side effects, and it's advised to switch chelators at some point.

As far as Exjade, with every new update, we hear about new problems with Exjade. I recently posted the latest about Exjade at
http://www.thalassemiapatientsandfriends.com/index.php?topic=3390.msg34628#msg34628  Some items of note:

(Exjade)... may cause renal, hepatic and gastrointestinal damage...this warning indicates that deferasirox may cause renal and hepatic impairment and/or failure and gastrointestinal hemorrhage. Reactions were severe enough to be fatal in some patients....
"Expert thalassemia centers and clinicians have known about these risks before the warning was added to the Exjade label.  Fortunately, most thalassemia patients are young compared to the older adults who had severe or fatal outcomes to Exjade use.  However, in the thalassemia population, stomach and duodenal ulcers, bleeding, liver and kidney problems have been noted, and therefore close monitoring is suggested.  Also fortunately, most thalassemia patients who take Exjade do so without these unwanted side effects."

These are the type of problems that only get worse over time. In addition, we must pay attention to the fact that hundreds of older patients (mainly Myelodysplastic syndrome  patients, who generally are older) have died while on an Exjade regimen. We do not hear this about the other chelators, in spite of various problems associated with these chelators. I don't think anyone should get into a panic, but I do think that older patients need to weigh their health condition, especially liver and kidney health, before starting on Exjade. As far as a case like Lena's, I agree with Lena that we just don't know enough about the use of Exjade at low iron levels to know how safe it is. Meanwhile, Ferriprox has a long established record and honestly, the deaths mentioned in the same breath as Ferrirpox are deaths that happened because Ferriprox was NOT available to the patients and not from using Ferriprox. Lisa was one of these statistics.

My other main concern is that patients in developing nations often do not have access to the close monitoring required with Exjade, yet the drug is being introduced into these countries with the full knowledge that monitoring will not always be what it should be. If the Big Pharma giant is going to introduce this drug into these situations, they should also open up their fat wallets to help the local treatment centers fully understand and fund monitoring compliance.

Manal,

your questions are logical, that's for sure.

I 100% agree with what Andy has said. I'll also add I am very reluctant to exjade use although I have really tried to be optimistic about it, in some cases I have tried to persuade my own self that it is a new drug and we should not be overreacting in our judgement about it. But I have also seen it is not successive as a monotherapy(which is what Novartis wants for exjade use), and as to combination therapy we have been trying a much more successful one over the years with no side effects - that of ferriprox-desferal. Last but not least, in low ferritin cases  like mine, why use exjade with its many side effects and not stick to ferriprox (proven ideal) or even ferriprox together with desferal (once in a while)?

Lena.

Thanks Andy and Lena for your replies ,

Hi Lena ,
How r u ? i hope that everything is running fine at ur place  in treatment and  every aspect ... best of luckk . .... u're doing a great job .. wish u all the best for everything .. take good care of ur self ..

Best Regards
Umair

My daughter has been on the Exjade and Desferral combination for the last six months as adviced by the doctor. Her Ferritin level has come down normally (nothing extraordinarily) and there has been minor side effects as rise of SGPT and SGOT for which I had to stop the Exjade for few days. The doctor had adviced me to administer Desferral for 6 days/week along with Exjade @ 30mg/kg. She is just 4.

Thanks for your input, Dey. This is very helpful for other parents who are looking for a solution to stubborn ferritin levels.

I hope people are mentioning the results of the combination of desferal and Exjade to their doctors. There have been many patients having great success with this, so please bring it up with your doctors if you are having trouble getting the ferritin down with one chelator only.