Question for Andy...

I don't know if it is the entire cause, but I suspect a combination of Exjade and dehydration is at fault. The effects of Exjade on the kidneys are well known. Sufficient hydration is needed for all patients on the drug, so that creatinine can be properly cleared from the body and not build in the muscles, where the noted pain has been observed.

What does it mean pancreas level of 300??
Is it T2*Score of MRI?
I have heard that pancreatic iron can be assessed by MRI

Pancreas AMYLASE 0-137 U/L normal
They say the cause of it is Exjade.

Emby,

Between the muscle pain which shows some evidence of kidney problems and the pancreatic level, it may be necessary to cease Exjade permanently. Raised blood levels of Amylase are mentioned over and over in case studies of patients using Exjade and having issues. Dehydration is also mentioned over and over.

Yes that is how I feel but H's Dr said we might start him back on the Exjade at alower level...but I have been clear to the doc about what I feel about that....

If Exjade is to be re-challenged, it has to be with the understanding that he has to stay hydrated all the time. He's going to have to be the one that makes the effort. With that said, why not Ferriprox?

Emby,

I just saw your posts. My guess is that if all tests done are within normal, you can blame it on exjade.
Really, what about ferriprox? Has your son even taken them and if not, why?

I wish you the best for your son,
Lena

I am a little upset these days, due to my MRI getting worse:

T2* heart  31  (last year 34,2)

T2* liver    27  (last year  31)

LIC          1,1   (last year  1)

Although this year's rates are still within normal, they are worse than last year's.
I am trying to find out why and I think it is because in my combination therapy I let the desferal rate  drop and had it twice weekly together with ferriprox. You see, my ferritin was 37 and we thought we could afford it. But no! things proved that I could not reduce the rate. Something I have posted again and again in this site. Do not slow down. Now I have to double my effort in order to reach my former rates.  

Thank you Lena...... both my boys were happily on Ferriprox. My older one still takes it. H's liver showed that he had moderate level of Iron so his Dr said he should go on Exjade. I was happier just to stay on Ferriprox but the Dr said that because his ferritin was around 150, she didn't want the ferritin to drop any lower and that Exjade was the best option. I was happy with Desferal/Ferriprox combo but she was determined.
I'm sorry cos I know people do take Exjade, and it works for them, but I just have never felt comfortable with Exjade. I had researched it and there is something about the way it was sort of ''given out'' to the masses that irked me. As I said, it does work for lots of people but it didn't work for H....he is getting better and inshAallah there will be no lasting effects.

Thanks Andy....don't want to go back on Exjade. Within 6 months of being on it being at the hospital we only then realisised all the essentials he has been losing from his body, potassium, phosphate, vitamin k, sodium chloride, glucose. Kidneys playing up, liver gone weird, pancreas abnormal, stomach reacting, blood pressure sky high, blood not clotting as normal.  Restarting it would be.......   

Thanks for saying all that about exjade, Emby.
I myself was on exjade one year ago and had terrible stomachburns and doctor gave me stomach pills in order to go on. Then, I made some search and decided on my own to stop exjade.
The truth is I was considering again now to start with it, but I am very reluctant. Thanks for all the info you put through.
I think I will stick to desferal/ferriprox (though a harder therapy it is.)

Lena you  really are someone to look up to. And mashaAllah, as God willed,  have done really well on the combi....I know what I have written but I also believe that no harm can come to you unless God wishes and no good can come to you unless God wishes and even if harm comes to you and even if good comes to you, it is only through His Eternal Wisdom and He wants the best for us...I believe that.
My internal feeling was not good when H was told to start on it and maybe it was Allahs way of saying something to me, that this would not be good for him and then He allows some people to take it and IT IS good for them....sorry I'm babbling on, it's just what I believe.

Lena,

I commend you on your constant vigilance. I am curious about your experience at low ferritin levels. Does your diet affect your ferritin level? Do you find that if you eat high iron foods, that there is an effect on your ferritin? I am curious because the official recommendations for thal diet is to not worry about iron rich foods, because the amount of iron is so much less than what is in one unit of blood.

Hi Lena,

Little surprised and happy to see you on board after a long time.
Your Fe, scan results are really fantastic..

Hope you will get ur desired results early.

May i know your bt requirement at present?

With H things were being drawn out of his body along with the Iron while on this chelator, so Lena do you take sipplements or have you had take something major while your ferritin has been so low and have you always felt well physically? Do you think his Dr is right to be concerned about lowering ferritin levels further?

H has been told to start eating and drinking again alhamdulillah. The amylase is now 36 and slowly other issues coming back to normal. The Dr says it takes a week to flush Exjade out of the system...so slowly nearly there inshaAllah. He might need to carry on with some meds at home. Still at the hospital...may Allah grant him shifa...ameenl