[cthomas555]

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

[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.

[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

[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]

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.

[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.

[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]

Pass the smelling salts. I received the news from Tthe company that distributes it in Tenn. that my Medicare Prescription Drug Coverage will pay for the Exjade. I read that it can cost up to $20,000 per year but the dosage is based on weight and I’m a lightweight. This month there will be no charge and next month I have to come up with the $250 deductible before I get the next month supply.

I have the bronze skin tone pigmentation and possibly iron-mediated cardiac dysfunction that could be reversible with chelation therapy.

Chris

[cthomas555]

Lydia, the last Ferritin report I have is Aug 15 2005 and my ferritin level at that time was 5097.0. I quit requesting reports after my rheumatologist advised me that ferritin is an acute-phase protein and I have autoimmune diseases so it is not a clear indicator of what is going on with the iron overload…at least that’s my understanding.

I have been tx dependent since May of 2001. My ferritin level from peripheral blood in Aug of 2003 was 1286.0. Treatment began in Oct 2003 through infusion pump. Developed allergy to Desferal several month later and currently receiving monthly infusions that are not very effective at time of transfusion.

I have heard nothing from the physician assistant who is setting this up for me nor Novartis. My thoughts are I will take this one step at a time.

Good luck with your Mom.

Chris

[cthomas555]

Here is the website link for http://www.us.exjade.com I will be starting it in January.

Chris

[cthomas555]

Hi Linda,
I am a patient at The Cleveland Clinic and was referred by my hematologist there for the Ex-Jade protocol early this year but I have surmised that I do not fit their criteria. I also have RA and other inflammatory acute phase proteins that contributes to my increased measurements of over 5000. My rheumatologist says to ignore it and my hematologist does not show great concern …to my dismay.

Chris

[cthomas555]

Marsha, as if you don’t have enough stuff requiring your energy and efforts I am sadden that you also had to deal with criticism from members of this list. May I apologize for their insensitivity and commend you for your mature response. You are my hero.

Chris

[cthomas555]

Good job.

Chris

[cthomas555]

I would like to add my name also.

Chris Thomas

[cthomas555]

I did have a febrile reaction during my second transfusion after I had been refused the leukocyte reduced, irradiated blood that I was told by the nurse was only given to the BMT patients and since I had COPD I would not qualify for a BMT so there was no reason to give it to me.

I told my internist about this refusal and she referred me to another Hem/Onc who I changed to who does not hesitate to order the leukocyte reduced, irradiated blood each month and he is in the same facility (Cleveland Clinic) as the initial hem/onc.

Chris

[Author]

Posts