Hemoglobin levels are dropping - Thal Intermedia

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Hemoglobin levels are dropping - Thal Intermedia
« on: January 04, 2012, 05:56:00 PM »
I hope some of you may be able to help me sort out this dilemma.

I began taking Exjade over a year ago and it has reduced my Fe levels from 2400+ down to 780.  I am very pleased with this result, however, I have increasingly felt worse.  (Short of breath, fatigue, dizziness, loss of appetite).

My hemoglobin level was 9.5 to 10.2 at the beginning of treatment, but seems to be declining over time.  Two months ago it was 8.9 and last week dropped to 8.3.  My physician suspected that my hgb would rise as Fe levels dropped, but does not appear to be doing so.  I have not noticed any blood loss.  Exjade dosage started at 2000 mg/day and has recently been reduced to 1500mg/day.  I do not have a history of having to transfuse.  Also, I had been feeling worse the past few weeks and have stopped taking the Exjade (temporary) until I felt better.  I am now feeling better and will resume with Exjade next week.  I plan on splitting the dosage to make it easier on my body.

My question is this:  If my hgb has dropped on my next visit (2 months) what tests should be performed?  Urine, stool?

Thanks to all for your great advice and support.

Bill
I plan on splitting my dosage to make it easier on my body. 

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Offline Mrs. T.

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Re: Hemoglobin levels are dropping - Thal Intermedia
« Reply #1 on: March 12, 2012, 01:55:45 AM »
As a Thal Intermedia patient in your same age range, I can relate to the hgb levels dropping.  My doctor said it is part of the aging process with thal.  The bone marrow has worked so hard for so long that by this age, it begins to slow down.  I had been on procrit injections to maintain my hgb between a 9 and 10 over the past 10 years, but it is no longer working.  Therefore, I have started a montly regiment of transfusions, because my hgb was in the 8's and I was not functioning well at all.  I begin my next course of treatment within the upcoming weeks, exjade, and would love to hear advice from you, as an experienced exjade user. 

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Offline Valkyria

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Re: Hemoglobin levels are dropping - Thal Intermedia
« Reply #2 on: March 12, 2012, 03:09:25 AM »
Your hb dropped after starting Exjade and you're feeling better since stopping; sounds like gastrointestinal bleeding, a common Exjade side effect

Re: Hemoglobin levels are dropping - Thal Intermedia
« Reply #3 on: March 12, 2012, 03:40:28 PM »
As a Thal Intermedia patient in your same age range, I can relate to the hgb levels dropping.  My doctor said it is part of the aging process with thal.  The bone marrow has worked so hard for so long that by this age, it begins to slow down.  I had been on procrit injections to maintain my hgb between a 9 and 10 over the past 10 years, but it is no longer working.  Therefore, I have started a montly regiment of transfusions, because my hgb was in the 8's and I was not functioning well at all.  I begin my next course of treatment within the upcoming weeks, exjade, and would love to hear advice from you, as an experienced exjade user. 

Hi,
Dear,

We could not able to judge what types of things will happen to us, blood disorder problems are varying from person to person.

How old are you & What type of mutations you have ? You did Hb Electrophoresis or DNA testing ?

If so, kindly share with us....My son is having problem since when he was 10month old and still now he reached to 18 months, still we could not able to conclude he is intermediate or major ? We haven't started Exjade as of now may be in future.
Kindly drop few lines.
Sys


 

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