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

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  #1  
Old Sun Apr 23, 2017, 05:22 PM
ashleyk ashleyk is offline
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therapeutic phlebotomy tiredness

Hello I'm new to the site (apologies if this has been covered before), and I had a question for those of you that have had iron overload and needed phlebotomies...have you been tired for a couple of days afterwards? I am getting phlebotomies once a month and just had my third one yesterday and feel exhausted and achy and sick. Has anyone experienced that or am I just odd? My last ferritin level was 4934 so I'm wondering how I'm supposed to deal with feeling like this each time.
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Ashley, diagnosed with Aplastic Anemia 2007, currently on Danazol and being treated for iron overload from blood transfusions
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Old Mon Apr 24, 2017, 09:18 AM
Marlene Marlene is offline
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John would be tired for a few days to a week after a phlebotomy. He had to go to every other month because over time, it was too taxing on his marrow and he wasn't able to replace the lost HGB in time for the next one. There was a time he would only get 1/2 a unit removed every other month.

Keep on eye on how well you replace what you're removing. It took about 3 months for John to see that monthly phlebotomies were to aggressive for him.
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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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Old Mon Apr 24, 2017, 07:14 PM
ashleyk ashleyk is offline
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Phlebotomy

Thanks so much for your reply. I thought I was just weird for feeling so tired. Its nice to know its not just me. I spoke with my hematologist's office today and I'm hoping we will know how much longer I have to keep this up. Its not fun that's for sure.
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Ashley, diagnosed with Aplastic Anemia 2007, currently on Danazol and being treated for iron overload from blood transfusions
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Old Tue Apr 25, 2017, 09:16 AM
Marlene Marlene is offline
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It's going to take a while. How many red cell transfusions did you have and for how long? FE readings can be misleading, especially when it's that high, so don't worry if you don't see a lot of movement downward right away or if you see an upward spike from time to time.

John said it would take about a week or two for him to feel normal again after a full phlebotomy.
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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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Old Sat Apr 29, 2017, 10:38 PM
ashleyk ashleyk is offline
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I want to say at its worst, i would get two units of blood every two or three weeks, with the average around once a month. Sometimes I would be lucky enough to go for longer without needing one. Luckily my Dr decided to try danazol and I haven't needed transfused in 3 years, but as you know that iron doesn't go anywhere and we have watched it go up.
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Ashley, diagnosed with Aplastic Anemia 2007, currently on Danazol and being treated for iron overload from blood transfusions
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Old Sun Apr 30, 2017, 09:54 AM
Marlene Marlene is offline
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Has your FE/iron continued to rise after your transfusions stopped? If so, you should ask to rule out hemochromatosis as a potential reason for this. Phlebotomies will take care of iron overload from this also.
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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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