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

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  #1  
Old Tue Feb 9, 2016, 07:32 PM
truthlover truthlover is offline
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Location: Saint-Jean-sur-Richelieu, QC, Canada
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Exjade

Hi everyone

Things are going well with the treatment of the cGVHD and I am now down to moderate level. It is now time to treat the iron overload. We tried phlebotomies but that isn't going to work for me - bad veins. So it looks like I'll be taking Exjade. My main concern is damage to my vision since I have limited vision already. My ferretin level is very high so I imagine I'll be on it for a long while. I am usually in the small percentage of people who have rare side-effects. How concerned should I be?

Michelle
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Michelle -- Diagnosed APL (M3) August 2010 - in remission. Diagnosed MDS RAEB Type II and AML (M6) July 2013. Allogenic SCT Oct. 11, 2013.
Saint-Jean-sur-Richelieu, Québec, Canada.
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  #2  
Old Tue Feb 9, 2016, 07:59 PM
riccd2001 riccd2001 is offline
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Exjade Side Effects...

I've been a long-time user of Exjade and your side effects may be quite different. The list of side effects given by Novartis is huge and unnerving for new users! But everyone is different and you'll have to keep a close eye on what's possible for you.

One bit of advice from my personal Exjade "problems" is the adverse effect it has on my serum creatinine levels and hence kidney function. I have to suspend taking Exjade for several weeks. That's all it takes to lower and improve things for me. Make sure you and your doc is aware of your creatinine levels!
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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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Old Wed Feb 10, 2016, 08:21 PM
Barb M Barb M is offline
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Location: Hendersonville, NC
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Jadenu

There is a new form of Exjade called Jadenu. Supposed to be less toxic for your body. I have been taking it since Christmas with very few side effects.
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  #4  
Old Thu Feb 11, 2016, 04:26 PM
vickij vickij is offline
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Location: Connersville, Indiana
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Jadenu

I have been taking Jadenu for about 6 months and no bad side effects.
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62 yr old female. dx AA 3/12.treated with ATG 4/12.dx MDS 4/13. MUD BMT on June 25th,2013
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  #5  
Old Wed Feb 17, 2016, 11:32 AM
truthlover truthlover is offline
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Location: Saint-Jean-sur-Richelieu, QC, Canada
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update

Thanks for your replies! I start Exjade tomorrow. Two phlebotomies and one major surgery brought my iron down from 5000 to 2400. As long as it gets below 1000 my oncologist will be happy. Apparently a normal level is 150. Still a ways to go! She was not familiar with Jadenu but is looking into it. Is there a financial aid program in Canada for Exjade? It is pretty expensive.

I'll keep you posted.
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Michelle -- Diagnosed APL (M3) August 2010 - in remission. Diagnosed MDS RAEB Type II and AML (M6) July 2013. Allogenic SCT Oct. 11, 2013.
Saint-Jean-sur-Richelieu, Québec, Canada.
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  #6  
Old Wed Feb 17, 2016, 01:30 PM
riccd2001 riccd2001 is offline
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Location: Burlington,Ontario,Canada
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Covered by Govenment of Ontario, but...

I can't say if Exjade is included in Quebec's list extraordinary drug coverage. Ask your doc who prescribed it for you to take.

There may be some paperwork required by you/doc to apply in writing to government for coverage. Good luck!
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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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  #7  
Old Wed Feb 17, 2016, 08:02 PM
PaulS PaulS is offline
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Hi - Don't know about Canada - but my transplant doctor said that Novartis had a pretty good program for getting patients Jadenu for free or at a discount if insurance was a problem - he felt strongly that Jadenu was a better choice than Exjade. I originally had Exjade approved by insurance - but then had them switch to Jadenu - a bit complicated but they did it. I was on Jadenu for about a month before transplant without any side effects.

Best,
Paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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