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Old Fri Jun 24, 2016, 08:46 PM
beverly beverly is offline
Join Date: Apr 2016
Posts: 12

Dear friends here at marrowforums...my husband David has taken his first dose of Jadenu today. Have any of you all used Jadenu? and if so, side effects? results? Any information you can give us we will appreciate. David was diagnosed with MDS and PNH in August 2014. Soliris and Azacitidine for now. Suspect Azacitidine is not working as well as it did earlier and he needs 2 units of packed red cells once a month now. Ferritin level 1530, hence Jadenu. our email address is: beverly@nehalemtel.net We appreciate your input VERY much! Thanks, Beverly and David Hague
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Old Sat Jun 25, 2016, 04:48 PM
vickij vickij is offline
Join Date: Apr 2013
Location: Connersville, Indiana
Posts: 117

Hi Beverly, I have been taking jadenu for almost a year now and I have not noticed any bad side effects. I also have phlebotomy every month. My ferritin level has gone down a lot but I still have a ways to go. It started out at 2300 and it is now 1200.
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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Old Mon Jun 27, 2016, 09:19 AM
PaulS PaulS is offline
Join Date: Sep 2014
Location: New York
Posts: 247
Hi Beverly - I too Jadeneu for about a month or so prior to my transplant - My ferritin was around 1500. I tolerated it well - didn't notice any side effects. I'm not sure how well it worked in lowering iron. Post transplant, after many more transfusions, my ferritin peaked at over 5000 - its was around 4000 last month and there was talk of starting phlebotomies - Since my hemoglobin is up in the normal range - they will prefer to go that route and avoid giving me another drug to add to the fistful I'm already taking - but Jadeneu was not a problem for me.
Best wishes,
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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