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Transfusions and Iron Overload Blood and platelet transfusions, iron testing and treatments

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  #1  
Old Wed Sep 27, 2006, 05:27 PM
seniorrico seniorrico is offline
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Serum ferretin levels

What is the accepted range for ferretin without going into toxic levels?
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  #2  
Old Sun Oct 1, 2006, 01:36 AM
Marrowforums Marrowforums is offline
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The following information was provided by the Patient Information Service of the Aplastic Anemia & MDS International Foundation.

The normal amount of iron in the body is 3 to 7 grams, some in the form of hemoglobin in circulating red cells, some in iron-containing proteins such as myoglobin, some as iron bound to transferrin in plasma, and some storage iron in the form of ferritin or hemosiderin. Adult men have about 1 gram of storage iron, mostly in the liver, spleen, and bone marrow, while adult women have less.

As to toxicity, normal serum ferritin range is 15-160 ng/ml. According to the AA&MDSIF iron overload fact sheet, by Dr. Pamela Becker, "once serum ferritin levels reach 1,000 to 2,000 ng/ml it is time to initiate a form of chelation. However, other tests help confirm need for chelation - serum iron level, serum total iron binding capacity, serum transferring level, and some type of direct assessment of the tissue iron stores."

Doctors differ over when to initiate treatment. Some initiate chelation when iron ferritin is over 1000 ng/ml or patients have received 20+ units of blood. Some chelate only when a patient is symptomatic, partly because they don’t want to introduce more drugs unless/until a patient is stable, and partly because they think the non-invasive, serum measuring tests are not precise enough.
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  #3  
Old Mon Oct 2, 2006, 02:36 PM
magpie75 magpie75 is offline
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Symptoms of iron overload?

Hi, I was wondering what the symptoms of iron overload are? I have had over 40 blood transfusions. I will ask my doctor to check my ferritan level, but was wondering if anyone had the information on symptoms.
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Maggie (56 year old woman) diagnosed with severe AA in January 2006. Treated May 2006 with High Dose Cytoxin, Nov.2008 had BMT, both at John Hopkins. WBC & Platelets now normal, RBC near normal, still high ferritin level.
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  #4  
Old Mon Oct 2, 2006, 11:09 PM
Ruth Cuadra Ruth Cuadra is offline
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One of the problems with iron overload is that you can have substantial tissue damage in your vital organs before you ever experience any symptoms. Common, nonspecific complaints of abdominal discomfort, lethargy, and fatigue would probably go unnoticed in a patient receiving numerous transfusions for anemia. It's the lack of specific symptoms plus the potential for organ damage that means doctors and patients should be looking for elevated ferritin levels and thinking about beginning chelation before damage occurs.

Regards,
Ruth
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98

Last edited by Ruth Cuadra : Thu Oct 5, 2006 at 03:44 PM.
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  #5  
Old Tue Oct 3, 2006, 05:09 PM
Marlene Marlene is offline
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Hi Maggie,

My husband did the Hy Cy at Hopkins also. He's in a partial stable remmission. I think it's good idea to have your local doc check your ferritin levels now to see where they're at. If they're above 1500, I would consider starting cheation therapy. It's better to stay on top of it if you can. John's shot up quickly. But he was transfusion dependent for two years. He's on Exjade right now and his FE is at 2400.

Marlene
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  #6  
Old Fri Oct 6, 2006, 08:30 PM
Monica Meyer Monica Meyer is offline
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Iron stains, blast cells and fresh blood

Dear Ruth,

You mentioned iron stains are needed to detect ringed sideroblasts. How do you test for iron stains? You mentioned that blast counts can be measured in the blood but what test do I ask for. Have had 13 tx-2 units each time-and want to be sure I don't get too much iron.

Went to the blood bank at St. Vincent's Hospital and I now have it on my chart to receive the freshest blood available. All of us getting tx.should do this and also follow Wendy's instructions about keeping records about the tx.expiring dates. One unit I received was expiring the day after I received it! And the other unit one week later. For two weeks I felt lousy.

Take care.
Monica dx. MDS-RARS-9/03--Procrit, Neupogen and Vidaza didn't work.

Last edited by Monica Meyer : Sun Oct 22, 2006 at 09:59 PM.
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  #7  
Old Fri Oct 6, 2006, 11:42 PM
Ruth Cuadra Ruth Cuadra is offline
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Hi, Monica.

A "peripheral blood smear", which is used to look at the appearance of the blood cells under the microscope, would detect the presence of blast cells. There may be other ways to do it too. Your doctor should understand what you are asking for and be able to tell you what test(s) s/he uses to find the answers.

Similarly, I believe the test for ringed sideroblasts is called an "iron stain", which is done on a blood sample. It might also be called a "siderocyte stain". Your doctor should be able to tell you how s/he typically tests for these.

Regards,
Ruth
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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  #8  
Old Sun Oct 8, 2006, 05:45 PM
magpie75 magpie75 is offline
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Ferritin level above 7000

Hi, I received a call from my Doctor's nurse late on Friday saying they received my tests back and my ferritin level was in the 7000 range and so my doctor wants me to start on Exjade. I will get the information this week and see if my insurance will pay for the drug. I do think this is very high and want to lower it as soon as possible. Also my doctor is ordering other tests which I will get on Monday, but don't know what they are yet. Obviously I worried about this all weekend, but hope to speak with my doctor and see where to go with this on Monday. I ready at another website that exjade can have some side effects, but the high ferritin level is also very scary. Any thoughts on that?

Marlene how long did it take for your husband to start producing some of his own platelets and blood after the hy cy? I have been waiting 5 months and am still totally transfusion dependent. I keep hoping.
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Maggie (56 year old woman) diagnosed with severe AA in January 2006. Treated May 2006 with High Dose Cytoxin, Nov.2008 had BMT, both at John Hopkins. WBC & Platelets now normal, RBC near normal, still high ferritin level.
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  #9  
Old Sun Oct 8, 2006, 06:58 PM
Marlene Marlene is offline
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Hi Maggie,

A Serum FE reading that high may be a bit misleading. John's had well over 200 units of red cells and never got that high. Rember that FE is very unreliable especially once it's elevated. Just about anything can elevate it....inflammation, infections, the way they handle the speciman in the lab as well as how long they keep the arm band on when drawing the blood. So don't be too alarmed. I assume you had an FE reading when you were first diagnosed.

When you start the Exjade, don't let them put you on a full dose at first. John started with 500 mg for the first three months. We just upped it by 250mg.

Recovery from Hy Cy is long and John took longer than the average to get transfusion free. He really was hit hard by the treatment. He went 84 days without a white count. It took him 20 months to be transfuion free of platelet and 22 months for red cells. He's in a partial stable remmission right now. Meaning he's transfusion free but counts are still low. But they are slowing rising. We just had a major bump in the road though. John fell and ruptured his quad tendon and just had surgery. So it will be a while before we know where his normal counts land. Since he lost about two points on his HGB, they transfused him with two units. Oh well.

Anyway....five months, even though it seems like forever, is not that long when it comes to hi cy. I don't know the recent stats, but the average mean time to be transfuion free is around 11-13 months. That was back in 2002. Some are sooner, others later. That's the one thing they can't predict. So hang in there. John stopped getting platelet transfusion when he could hold 8k on his own.

So at what intervals are getting transfused now?

Hang in there, you will get there.

Marlene
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  #10  
Old Mon Oct 9, 2006, 07:18 PM
magpie75 magpie75 is offline
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Marlene thanks for your reply. I had my ferritin levels retested today and will see what the second reading is. I don't know if there is a baseline count from before my transfusions, will have to check. Also my doctors office is just sending in the information to Novartis for the Exjade prescription and I will have to wait and see if my insurance will pay for it.

I will discuss the dosage with my doctor. He originally said I should take 1500 (3) 500 mg tabs per day. But this is the first time he has prescribed this drug and he probably got the information directly from the Exjade literature which recommends that dosage for someone my size. I will not take the dosage until we have a chance to discuss.

I am currently getting a platelet transfusion every 5 or 6 days when the count falls below 10. Red blood cells I have been getting every 10 to 12 days, but I want to extend the length between transfusions. However, I get to0 tired to function normally when the hgb goes below 8.5. My doctor has been ordering transfusions when I'm at a higher level, so we can probably cut back somewhat on the transfusions.
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Maggie (56 year old woman) diagnosed with severe AA in January 2006. Treated May 2006 with High Dose Cytoxin, Nov.2008 had BMT, both at John Hopkins. WBC & Platelets now normal, RBC near normal, still high ferritin level.
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  #11  
Old Sat Oct 14, 2006, 12:16 PM
Marlene Marlene is offline
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Hi Maggie,

That's not a bad schedule at 5 months. I know how tiresome it is though. You just keep watching those CBCs and waiting. You may want to ask your local hemo to start doing retic % and absolute retic counts periodically. That will give you an indication that you are making more red cells as those number climb. As those numbers increase, you'll eventually start to see more time between transfusions. John was at 14- 17 day interval for red cells, went to transfusing just one unit and then got up to 21 days and then they just held. That was over a course of 3-4 months.


Take care,
Marlene
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  #12  
Old Mon Jun 4, 2007, 12:28 AM
Robert siu Robert siu is offline
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Question

Quote:
Originally Posted by Marlene View Post
Hi Maggie,

My husband did the Hy Cy at Hopkins also. He's in a partial stable remmission. I think it's good idea to have your local doc check your ferritin levels now to see where they're at. If they're above 1500, I would consider starting cheation therapy. It's better to stay on top of it if you can. John's shot up quickly. But he was transfusion dependent for two years. He's on Exjade right now and his FE is at 2400.

Marlene
Dear Marlene
My wife was on transfusion for 2 year and undergo iron chelation with Exjade her ferritin was moving up and down between 1000 to 2000.she received 3 units of blood every 6 weeks .is there anyone reading this message able to tell me what is the target level of ferritin withsuch transfusion and Exjade treatment Robert my wife was dx with RAEB in end 2004
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  #13  
Old Tue Jun 5, 2007, 06:10 PM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by Robert siu View Post
My wife was on transfusion for 2 year and undergo iron chelation with Exjade her ferritin was moving up and down between 1000 to 2000.she received 3 units of blood every 6 weeks .is there anyone reading this message able to tell me what is the target level of ferritin withsuch transfusion and Exjade treatment
Robert,

Doctors differ over exactly when to initiate treatment for iron overload, but it's usually when the serum ferritin level is in the range of 1,000 to 2,000 ng/ml. Once a patient is taking Exjade, he or she takes it every day, not just when their serum ferritin drops to a certain level, so you might want to ask your wife's doctor if he/she thinks the Exjade has been effective for your wife.

According to the AA&MDSIF Iron Overload page, patients on Exjade (or Desferal) probably need to continue taking it as long as they require red blood cell transfusions. If transfusions are no longer needed and the serum ferritin level drops below 800 ng/ml, then it may be safest to stop the chelation treatment.

There's a controversy about Vitamin C for patients taking Exjade or Desferal, so I suggest that you read the section called Should Vitamin C be given along with Desferal or Exjade? and then ask your wife's doctor about the amount of Vitamin C she should get.

There are a number of good sources of facts and advice:You may be able to find answers to many of your questions, but each patient is different and responds to treatments differently, so you should definitely talk to your wife's doctor to review what you learn, and continue asking questions when you have them.

I hope this helps, Robert, and I invite other patients who are taking Exjade to share their experiences.

Neil
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  #14  
Old Tue Jun 5, 2007, 09:47 PM
Wendy Beltrami Wendy Beltrami is offline
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Exjade experience

Hi-
My son Grant has been taking Exjade for several months. He HATES it and still really has to gag it down. He mixes it with orange juice and lets it dissolve for about an hour. His dosage is 1500 mg per day (three 500 mg tablets). He takes it just before bed and has not had any adverse effects at all. His current ferritin level is around 2700. It was down to 1700 but then his need for rbcs increased a bit so we saw it climb back up. He uses any excuse to not take it, but even when he takes it religiously on a daily basis, the ferritin reduction is slow. It does work though and is certainly a better choice for him than attempting to deal with subcutaneous Desferal. With platelets running in the single digits, the daily subQ would most certainly be problematic with bruising and bleeding.

Paying for Exjade is another story entirely. We have been fortunate enough to have some angels help us out with getting Exjade. Our Blue Cross policy does not have Exjade on their formulary, so the non formulary copay for this drug is over $2000 for a 30 day supply which of course is ridiculous.

We were denied assistance by HealthWell Foundation and also by Novartis. I am now in the process of appealing to Novartis again, letting them know exactly what it costs to be transfusion dependent for a year, even WITH pretty good health coverage. I'll let you know how it turns out.

Wendy/mom to Grant, age 15
dx 12/4/98 AA
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  #15  
Old Wed Jun 6, 2007, 12:25 PM
Jimbob Jimbob is offline
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exade and liver damage

I have read that Exjade should not be used if one has liver damage. My feriton level is 5300 3 years post SCT and after more than 80 transfusions. Anyone have any suggestions?
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  #16  
Old Wed Jun 6, 2007, 12:45 PM
Marlene Marlene is offline
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How are your red cells today

Hi Jim,

Did the SCT restore you counts....If your HGB is at or above 11, I would recommend you try theraputic phlebotomies. John did them with a HGB of 10. He stopped them when Exjade became available. Oh, I assume you are transfusion independent.

Marlene
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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