Exjade

[patti]

Lydia,

I guess my biggest thought is if you’re taking the Exjade because you think the iron overload is affecting her organs then it’s probably not wise to cut the dose. If you’re taking the Exjade because her doctor wants you to and your not convinced of its need, why bother taking it? As Neil has stated before, it takes 10-15yrs for organ damage to happen from iron overload. I guess taking it would depend on a person’s age but my general thoughts are why add another drug when it’s only going to tax the heck out of her kidneys for damage that may not happen for many years? And the doctor is a liar if they tell you it won’t tax her kidneys. That’s how the iron is excreted.

Just a thought.

patti

[cthomas555]

Lydia, I am concerned about the dose as well. I thought I would phone the physician assistant next week to see if I could start at a lower dose because it usually takes a sub-therapeutic level of most meds to treat my problem. It seems to me that 1000 mg. a day is awfully high for someone weighing only 116 lbs and on Prednisone so it’s mostly water weight.

The doctor prescribed that dose so I think Novartis would refer me back to him if I phoned them. But what do I know. I do know it takes a long time to get the levels down and my lab test and clinical symptoms do need immediate attention. I will keep you and all informed to what I find out.

I am certain that there was no one in the trials that had my set of medical problems. If there are complication, whatever Novartis may learn from my experience may help someone in the future.

Chris

[cthomas555]

I spoke with the Exjade pharmacist today and she tells me that it only takes 1 to 3 months for the Exjade to remove the excess iron. Amazing! She also told me that 2 pills, 1000 mg was the correct dose for my weight so I will see how I react to that dosage.

[patti]

Lydia and Chris,

If it only takes 3 mos for exjade to remove all of that extra iron I want to encourage you (Lydia, your mom) to get on something NOW to stregthen your kidneys. That is a tremendous strain to put on your kidneys over three months! My best recommendation would be Natures Sunshine Kidney Activator. I believe it’s a twice daily capsule and it is relatively inexpensive. At the very least it will help keep the kidneys from being so taxed. http://www.naturessunshine.com

Best wishes,

patti

[cthomas555]

Patti I think you may be mistaken about it overtaxing the kidneys. What is your source for your statement?

The length of time for organ damage may have been an earlier theory that has since been revised. I also think you would want to avoid organ damage by removing the iron before that happens since that could lead to death or diseases including heart failure, diabetes, arthritis, cirrhosis and fibrosis of the liver, gallbladder disorders, depression, impotence, infertility and cancer, plus others.

[patti]

Chris,

I might be mistaken but everything I’ve read about iron chelation therapies is that the drug binds to the extra iron and it is then excreted from the body via the kidneys (urine). I am sure John or Marla would be able to verify or correct this if I’m wrong.

As for how long it takes for organ damage to happen. That certainly could have changed. I know our doctor told us that kids can experience damage very quickly. Again, the decision a person makes really needs to be based on their individual situation. All I was saying is that depending on a person’s age and their other health factors it may not be worth doing chelation. I am also using Neil’s information about organ damage taking 10-15yrs.

I do hope the exjade works for you because I know you have another of other health issues involved.

Best wishes,

patti

[cthomas555]

Patti,

The Mechanism of action/Pharmacodynamics for Exjade states that “Iron excretion was predominantly fecal.”

A source: http://www.rxlist.com/cgi/generic4/exjade_cp.htm

[cthomas555]

Lydia, about a lower dose…the literature does state that:

“Reduction of LIC and serum ferritin were observed with EXJADE doses of 20 to 30 mg/kg. EXJADE doses below 20 mg/kg/day failed to provide consistent lowering of LIC and serum ferritin levels Therefore, a starting dose of 20 mg/kg/day is recommended.”

Chris

[covergirl]

FYI – I am on day 7 of Exjade. Thomas’s cite above regarding iron excretion is correct – at least in my case.
–cheryl

[patti]

Chris,

I’ll read when I get a chance and post back a little later. Gotta go get school started right now.

patti

[patti]

Chris,

I finally had time to do some reading. From what I read desferal works primarily by excreting the iron via urine with a small amount being passed via the bowels. I also googled Exjade and did quite a bit of reading on it and it also excretes iron via BOTH the urine and the bowels. I was unable to determine percentages for either mode of excretion because there isn’t a lot of info on Exjade yet. *Most* chelation therapies (there are others besides for iron) use the kidneys/urine as the *main* method of excretion and it is safer to assume that exjade is the same way then to not assume it. I wish I could have found percentages. All I am suggesting is that if one is going to use the Exjade, it might be wise to use something to protect/strengthen the kidneys at the same time. I still stand by that recommendation based on what I read tonight. I only read about 4 or 5 articles but they were all consistent in what they said.

I definately hope the exjade works for you. I know you really needed it. Maybe drink lots of cranberry juice.

Best wishes,

patti

[cthomas555]

Patti, the percentage is “84% of the deferasirox and metabolites dose is excreted in the feces. Renal excretion of deferasirox and metabolites is a minimal 8% of the administered dose.”

I would not use a new supplements with a new prescription.

I have been stable for many years without supplements and I’m also a believer of “if it ain’t broke, don’t fix it.”

By the way, I have diabetes and juices are not recommended. I’m also under the care of a nutritionist who assist with my diet.

However, thank you for your concern.

[patti]

Chris,

Yep, wouldn’t do juice with diabetes. I failed to look at your bio line. But I can relate (at least a little). I was a gestational diabetic and had to give myself insulin shots for 5 months. I still have to be very careful with my blood sugar. I remember the stress of being gestational, I feel for full time diabetics. It is hard to be diligent with the protein/carb balance!

Best Wishes,

patti

[diner]

Chris, I’m so glad that you will be able to get your Exjade. That’s terrible what it costs and even more so when insurance won’t cover it.
Good luck.

Dee

[cthomas555]

No, Patti…I don’t have to balance “proteins and carbs.”

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