Ferriprox-exjade combination therapy

Lena,

Hoping your infection will clear up and that all of your numbers will be spot on after your chelator detox!

Sharmin

Thanks Sharmin,

white blood cells now 20000 , only SGPT remains high and this is due to exjade definitely. One month away froma any chelation for the body to clear and SGPT back to normal and then rearrangement with only ferriprox, low dosage.

Andy,


I definitely agree with you and that's what I am going to do.
Maybe Novartis should add the white blood cells increase in their bibliography. Maybe.

Lena I'm so glad to hear that your WCC level is coming down to normal.. ...and totally agree with you..there is much Novartis need to add on..

Thanks, Emby.

I really am convinced now that the WBC raise is due to ferriprox-exjade combination therapy and if doctors have not met with that before, it's time to write a new symptom down in their agenda.

I am happy to say that everything went back to normal. White blood cells, SGPT  and SGOT of liver went down to normal after 10 days away from any chelation at all. Will remain off some more days and start ferriprox only, on New Year.
Everything is clear on my mind now, exjade started it all including WBC raise.

That is excellent news Lena!

I think Exjade works best when ferritin is extremely high. It is quite an effective chelator for that reason alone I think and the fact that it is more widely available and easy-ish to take  but at 'normal' level of ferritin or very low level, Exjade should not be given. I don't know how much research has gone into the side effects of Exjade when taken at low level ferritin though I do feel this chelator is not an 'all rounder'.

Dearest friends,
I am happy to tell you that my liver scan was good and that my ferritin has dropped to 100!!!
Keep the fight and faith. You too will knock ferritin out!   (and yes, I continue my chelation. It takes some time to figure out how much is enough. Does anyone has any thoughts?)

That is excellent news Lena!

I think Exjade works best when ferritin is extremely high. It is quite an effective chelator for that reason alone I think and the fact that it is more widely available and easy-ish to take  but at 'normal' level of ferritin or very low level, Exjade should not be given. I don't know how much research has gone into the side effects of Exjade when taken at low level ferritin though I do feel this chelator is not an 'all rounder'.

Emby should I quite Exjade now my ferritin is only 100?

You should not be chelating at that low ferritin. You can begin again once it's above 300.

Yes that is the advice our doctors give too, to stop chelation when ferritin is at such a low level.

My sons levels were that low too at one point but they didn't stop chelating completely.
They carried on with reduced chelation for only for about 2 days a week.

Congratulations by the way Dori!! So nice to hear from you!

Thank you for your replies!!
Shall I try to keep it at 300? It may already be 300 as I did not hear my latests ferritin. I did not ask for it because I had not be so rightenous. But I passed all my exams
Would you advise to stick to Ferriprox rather than Exjade? (I would vote for Ferriprox myself)
How much mg/kg/day should I take?
Emby: chelation for two days a week??

I am sorry for all these questions but this is a complete new level of treatment for me. My liver specialist wants me to continue chelation to clear my liver as much as possible. I guess he is a perfectionist!

Up to 500 is good and healthy with heart and liver being monitored yearly.
With Ferriprox, it is easier to keep the heart clear of iron but Ferriprox may not be the best to reduce liver iron so a combination of chelaters will be better till liver is cleared of iron again.
As your Ferritin is low perhaps you can switch to Desferal for a while till liver iron clears as Desferal is more effective on liver. I'm not sure if Exjade might work better, maybe someone will advise you regarding this. Even with Desfearal, you shouldn't chelate everyday as your ferritin is very low and monitor heart and liver to see progress/changes.

  

 

Dori, please check if it is okay to take exjade at low level ferritin. If you are not used to taking enough liquids/ not that used to drinking water alot then it may not be the ideal chelator.
Perhaps someone here may be able to advice better if they have taken exjade at low level ferritin and if it has helped to reduce liver iron.

I have always been the proponent of stopping chelation at low levels (300-500). I floated this idea some years back and received strong rebuttal from some respectable members. Our daughter Little Miss A has had numerous vacations from exjade in the last 9 years or so and she is doing fine.

Best of luck Dori and keep healthy.