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View Full Version : No Ferriprox for you(MDS)


riccd2001
Thu Oct 20, 2011, 08:15 PM
FDA now says MDS will not qualify for Ferriprox treatment as alternative to Exjade or Desferal. :mad:


http://www.mdsbeacon.com/news/2011/10/17/fda-approves-ferriprox-deferiprone-but-not-for-myelodysplastic-syndromes-patients/

usaf1125
Tue Oct 25, 2011, 09:51 PM
I have had 277 units of blood, Ferritin level was off the charts. Have been taking ExJade for 5 years, can only take one daily, even the one sometimes cause an upset stomach. On 10/17/11 the level was down to 2854, it does take a while, but it will come thru. I've had MDS for 7 years, transfusions started slow only had 4 the 1st year,now I'm up to 2 units every 2 to 4 weeks, it varies, most of the time it's 2 weeks. I worry more about the iron levels than I do the MDS. Other than the transfusions the only thing I take is 40,000 units of Procrit one a week, I inject my self. I have no idea what my blasts are or anything else. The only things I pay attention to is my Crt level and the ferritin. I don't worry about it, because I can't change any thing. That's the only advice I can give. worry never changed anything. I have had two Triple A operations, my appendix out twice, Arnold Chiari Malformation, 4 heart stents, I have Chron's as well. So when I say don't worry, don't. I hope everything works out for you, I know it's hard but don't let it get you down. I'm 79 years old now and I welcome each day as a marvelous event

cathybee1
Wed Oct 26, 2011, 09:52 PM
Wow, you are so inspiring. And your advice is worth millions. Thank you --

usaf1125
Thu Oct 27, 2011, 12:42 AM
:)Thank you Kathy, I hope I helped you, I know it can be difficult, but keep it at arms length, don't let it get you down. I break down every now and then ,that's human nature.Keep positive ,enjoy every day, and remember there is always some one out there that has it worse than you.Treat each day has a marvel, be good to your self and any one you meet. REMEMBER WORRY WILL NOT CHANGE ANY THING.Prayer is OK, but worry is out. I don't come on to this site often, if you would like to talk go to leojean@comcast.net, make the subject "Bone Marrow MDS" good luck.