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#1
Fri Nov 30, 2012, 07:33 PM
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Cll and Exjade
Hi All,
I have chronic lymphocytic leukemia, I've had it since the mid-90s, and only in the past 4 yrs. have I been symptomatic. I tried chlorambucil and rituxan, but the chlorambucil lowered platelets along with the bad lymphs, and the rituxan caused intervals between RBC transfusions to go from 4-6 weeks down to 2. Now, I've been transfusion dependent on RBCs since 1/11, and the iron has built up...........SF is around 1700. My onc wants to put me on 500 mg. daily of Exjade, but with platelets at 25, I'm scared. Supposedly, she looked into it, but I'm not sure. I don't want to get hemorrhages...........although my clotting factors, just tested 3 weeks ago, are all normal. What's your opinion on taking Exjade with platelets at 25, at a dose of 500 mg. daily? Thanks, Ellen R. 
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Ellen, age 68; dx. 5/00 with chronic lymphocytic leukemia. Transfusion dependent since 1/11. Now have low platelets of 25, and, very reluctantly will start on Exjade due to SF of 1700. Worried about side effects, because of warnings from Novartis. 
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#2
Fri Nov 30, 2012, 09:20 PM
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Exjade
Hi Ellen-
I took Exjade for 6 monts a while back. I am not aware of the issue with taking it w/low platelets..... I don't recall what my platelets were at the time....but the certainly were below normal....
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Dx. 6/08 with AA, then changed shortly thereafter to MDS. Campath trial at NIH March '09 and have been transfussion independent since June '09
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#3
Sat Dec 1, 2012, 12:21 AM
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Side effect on Creatinine level
If you take Exjade, make sure to keep an eye on your Creatinine level.
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Ric: Low-risk MDS (blasts <4%); 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 392'units' over 8 3/4 years; BMB #4 (15/04/01) shows evolution to AML (blasts 20-30%  ) 47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).
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#4
Sat Dec 1, 2012, 09:59 AM
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Yes, watch your creatinine level. I was put on Exjade to lower my ferritin (3660). I also had low platelets (transfusion dependent, in fact). But I was able to take the Exjade for only a couple of weeks before the doctor discontinued it because of its adverse effects on my kidneys. Interestingly, I felt fine while taking it, and I don't believe it had any particular effect on my platelet count.
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Marmab, F65, SAA/hypo MDS dx 7/2011. Tried ATG/CsA, IvIG, Rituxan, prednisone, Promacta -- none of these helped. Transfusion dependent until MUD BMT 7/17/14. Prep. regimen of Campath, Fludarabine & Cytoxan. Doing great. 100% engraftment. No GVHD.
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#5
Sat Dec 1, 2012, 11:21 AM
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exjade and low platelets
Thanks, all. I do plan to have a weekly comp chem panel, and a urinalysis for protein, and will even go to the drug store to get a fecal occult blood test kit. I'd still like to hear from those who had platelets around 25 before starting exjade to know if their platelets dropped while on the drug.
Ellen
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Ellen, age 68; dx. 5/00 with chronic lymphocytic leukemia. Transfusion dependent since 1/11. Now have low platelets of 25, and, very reluctantly will start on Exjade due to SF of 1700. Worried about side effects, because of warnings from Novartis.
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