ferratin level at 7000

[lucym]

Well Mom went to the doctor today and her PLT 37, last tx 10days ago, the doctor was shocked. Although her HGB was 8.7 after receiving 2 units only 3days ago we were not that happy. He said her liver and kidneys were OK. The BUN number (45)I was looking at was not important. They did a ferratin level and it was 7000. I asked him about exjade and he said if my Mom was younger say my age (37) he would be worried in 20 years I would have kidney/liver trouble but not for her at 63. He did not want to start exjade and introduce another possible problem. I am not sure I agree, anyone on exjade can you tell me at what level you started your exjade? How often did you take the pill? When did you see a decrease? Did you take it while still getting RB tx? Is there another way to get rid of the iron naturally?
Thanks
Lucy

[Russ]

Hi Lucy, Can’t tell you much about exjade except it is terribly expensive. My hemo suggested it for me and I found my co-pay with the new Medicare part D would be $2458 for the 1st month. (Actual cost was over 5000 so you hit the donut hole immediately.) I decided at my age I would chance any organ damage from iron overload. Prayers for your mom.

[lucym]

Russ at what level did your doc rec. for you?

[patti]

Lucy,

Mom is 76 and her ferritin is 3018. We are starting exjade this next week but with some very careful precautions. Exjade dosing is based on a person’s height and weight. My MIL is 5’7″ and 130lbs. Her dose should be 1250mg. per day. We are starting her on 250mg. per day for 30 days and then up to 500mg per day after that. No more. At the same time, Dr.Kou has started her on a food called Mung Bean. It’s just what it says, it’s beans. It is a natural chelator as well as a platelet increaser. Our goal for mom is between the mung bean and the low dose of Exjade to just keep her from getting any higher. She does have some signs of liver damage. The skin around her eyes is orange and just at the bridge of her nose.

The pharmacist depensing the Exjade to us talked to me last night. When I explained to him what we would be doing with the dosage, he was thrilled. He said he felt like at mom’s age it would be very bad to throw this high of a dose at her. He also said that with this low dose she should experience no side effects (diarhea and nausea) at all. Coming from the pharmacist who is giving this stuff out, I take it as very telling that he was RELIEVED that she wouldn’t be taking that high of a dose. So I guess that would be my recommendation if you really want your mom on a chelator. I think I would recommend that for everyone, quite frankly. Lowest doses possible – always. Also, exjade is known to lower white cells so we have to watch that carefully also.

We’re interested to see what will happen with the mung beans since we have actually started it before the exjade. Not sure if we’ll check her ferritin again before we start the exjade to see if it’s made a difference though.

Take care.

patti

[helenr]

Patti

Is the mung bean a concentrated preparation of just the natural food? I used to germinate the seeds and use it in salads.

Helen

[Russ]

Lucy,
Exjade dosage that the costs were figured was at the max – my wgt is 170#. If I actually went on it it might have been started lower. That mung bean sounds interesting.

[Carl]

Lucy,

Patti is right on by suggesting a lowest possible dosage to start with on Exjade. I started on the “prescribed” mega dosage based on my weight and the diarreah almost put me in the hospital. Start slow and work up to your prescribed dosage so it does not impact your system so suddenly.

[marlene]

Hi Lucy,
7000 thousand is high. How many red cell ransfusions has she had? Do you know what her ferritin was prior to her illness. John’s was 392. John had well over 200 packed red cell transfusions over a two year period and his FE got up to 5400. It’s always possible that hemachromatosis (sp) is contributing such high levels. And our doctor has said that high iron can suppress your bone marrow. Apparently, it can settle in the BM. He wants John’s down below 1000 at a minimum. And once FE levels are elevated, everything can effect the test results. Any inflamation, infection, keeping the band on your arm too long when they draw the sample can all effect the reading. We’ve had FE fluctuate by 1500 points in the same month.

62 is still young by my standards but I understand where your doc is coming from….he’s focused on the most immediate issue…her AML and want to get that stable.

John is now on Exjade. He started with 500mg in June and we will look to up the dose at the end of Sept. He has had a CBC every two to three weeks along with a chem panel to monitor liver and kidney function. He still has some nausea from it but he tolerates it much better than desferral. Many side effects are dose related. And since John is no longer transfusion dependent, he probably will never need to get to a full dose for the Exjade to be effective.

Marlene

——-
John diag 4/02 SAA. High Dose Cytoxan 6/02. Transfusion free – partial remission. Only med is Exjade for iron overload.

[patti]

Mung beans are a very small (1/2 the size of a pea) green bean. You soak them for many hours and cook them just like other beans. Mom says they taste pretty darn good. It’s not a supplement, it’s a food.

We buy them at the Asian food store. Not sure if they’re available in regular grocery stores. We get other stuff at the Asain market so I just buy it all there.

Our doctor described exactly what Marlene said. The iron builds up in the marrow and crowds out the cells causing problems. At 7000, you might want to consider a low/slow chelation so it doesn’t overwhelm her body.

Patti

Hope this helps.

Patti

[cthomas555]

Hi, my update…

I have Rheumatoid Arthritis, and other inflammatory diseases, so my Ferritin count is unreliable to determine the level of my iron overload. One month it is 2000 and the following month, even after Exjade treatments, over 5000.

I was told by the nurse practioner and also read that as long as you receive transfusions you will require Exjade treatment. The Ferritin level may not lower too much while you are on transfusions and Exjade, but it will not go up too much more either.

I hate drinking Exjade, but considering the alternative it’s not so bad. I hate having to wait 45 min each morning until I can eat or drink. I am quite non-compliant and miss two or three mornings a week. With the diabetes, sometimes my glucose level is low and I need some sustenance upon awakening.

I take 1000mg according to my weight. The pamphlets says it will not work at lower than the prescribed therapeutic level. I’ve had no problem other than mild cramping sometimes and mild diarrhea. My ALT, BUN and Creatinine counts hold steady. My skin coloring now vary more…before and after a transfusion. I hope I can get another ferritin count on Tuesday, but it may be too late for the hem/onc secretary to order it.

Here is more information on Iron Overload for those who can use it.

Transfusional . . . Iron Overload

The clinical manifestations and pathology that may develop in patients with iron-loading anemias are similar to those seen in hereditary hemochromatosis, including liver disease, diabetes mellitus, endocrine disorders, and cardiac dysfunction.

About 200 to 250 mg of iron is added to the body iron load with each unit of transfused red cells. Most transfusion-dependent patients require 200 to 300 ml/kg of blood a year; for example, a 70 kg adult requires about two to three units of blood every 3 to 4 weeks, adding about 6 to 10 g of iron a year. The severity of iron toxicity seems to be related to the magnitude of the body iron burden. Almost all patients who have been treated with transfusion alone and have received 100 or more units of blood (about 20 to 25 g of iron) have developed cardiac iron deposits, often in association with signs of hepatic, pancreatic, and endocrine damage.

Iron chelation therapy should be started early to prevent the accumulation of toxic amounts of iron in vulnerable tissues and to maintain body iron stores at concentrations associated with a low risk of early death and clinical complications. The longer chelation therapy is delayed, the greater the risk of iron toxicity.

http://www.medscape.com/viewarticle/535021

Chris

[patti]

Chris,

It’s interesting the phamplets tell you the exjade is not effective below the therapeutic level. That goes against both what the pharmacist and doctor told us. It also appears to work for Marlene’s husband at the 500mg dose. I guess we’ll see with my MIL.

Patti

[marlene]

Pattie,

Exjade will remove iron even at low doses but it may not be enough to be considered effective. Like Chris said, as long as you are getting Red Cell transfuions you continue to get more iron, about 200-250 mg of iron. So for a therapy to be considered effective, you need to chelate out more than what you are putting in and that translates to higher doses of Exjade. So if you’re getting red cell every two weeks, 500mg of Exjade is not going to show a reduction in your overall load even though you are eliminating some with it. So if two people are on the same, standard dose but one gets transfuions every two weeks and the other only needs them once a month, the second person see a better response to the chelation therapy. All the studies done on Exjade measure the concentration of Iron in the liver and they did not rely on FE reading. I also think everyone was transfusion dependent.

So 500 mg for John is noticable because he no longer gets red cells. His FE has dropped about 100 points per month and he would like to try and speed that up by increasing his dose.

Marlene

[cthomas555]

Patti,

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

You can also read the details of the Novartis clinical
trials of EXJADE in this report.

http://www.pharma.us.novartis.com/product/pi/pdf/exjade.
pdf#search=%22exjade%20below%20therapeutic%20level%22

Chris

[patti]

Marlene and Chris,

Okay, so they’re saying that it won’t lower the iron level at lower doses. For us, it should maintain it at the very least. At this point, our goal is just to keep it from going any higher. We may, at some point in the future, deal with actually lowering it but we are waiting on that for right now. Makes a little more sense. Thanks for the info.

patti

ps. Marlene, is there a reason your husband chose exjade over phlebotomy since he’s not transfusion dependant anymore? Just curious.

[marlene]

Hi Pattie,

John was doing phlebotomies up until April of this year. He was scheduled for monthly draws and his HGB had to be at 10 or higher. He couldn’t get there without the help of procrit. The phlebotomies were getting a bit tiring. It would take two weeks for him to get his energy back and he’s working full time. We originally planned to see if he could do both, but space out the phlebotomies so they weren’t as frequent all the while taking the Exjade. So in April, he stopped the procrit because he wanted to see where he would land on his own. He was haning out in the mid to upper nines so he could no longer get one. He finally made it up to 10 at his last appointment but John does not want to resume phlebotomies until he gets to 12 on his own. He doesn’t want to start up the procrit again either.

That’s it in a nutshell.

Marlene

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