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Naomi
MemberJim:
I started out on 1750mg exjade and it was lousy. It tasted terrible and I did not want to affect my orange juice in the mornings. It did not do well for me. Increased the diarrhea, lowered platelet counts and I am still having trouble with them. I also had c-diff while taking the exjade.
My doc said he had more patients with trouble with it also.
I am now on desferal pump and it is not too bad. It seems to be taking the counts down, but the need of rbc txs keep it goingNaomi
Membersgoodman: I took 10mg; had reaction, -hives- took 5mg;went out of remission then took 10mg and toward the end was upped to 15mg as I was still on the trial.
NaomiMemberGood for you Kirby…revlimid worked for me for almost 3 years. I am always glad to hear that something works for others.
Na9miMemberGees, I don’t even know how to spell my name.
NaomiMemberEve:
I am sorry to hear that your father has passed away. My prayers will continue for you and the family.
NaomiMemberHi Jimbob:
I agree with Neil, what a story!!
Hope all things are getting better and continue to do so.
Take care and do not over do again.
NaomiMemberHi Pat & Dottie:
I am in a low funk. My platelets have really been giving me trouble. I have had to have several txs and my hct went down, so yesterday I had to have plts and rcbs. I see the doc on 1/3, so should have a better understanding of what is happening. I still cannot go back on revlimid, as my counts are too low. I have no energy and do not like feeling like this, so just plug away one day at a time. Hopefully 2007 will be better for all of us.
NaomiMemberSandy:
So sorry to hear about Mike. My prayers will be for you and your family
NaomiMemberHi Pat and Dottie
I have been on revlimid for 3 years. I had an episode this past spring and it sent my counts haywire. My doc had to get special permission to give me 15mg of revlimid. I wonder how you got larger doses. I have been off it for the past month because all of a sudden my platelets have dropped and we are working to get them back up. Nose bleeds do not help. Never had them in my life before.
NaomiMemberPatti:
I mentioned this to Dr John Bennett at U of R. He said that he was not aware this was happening, but would look into it and see if others were having the same effect.
Exjade gave me severe diarrhea and then followed c-diff. I have not been able to beat the c-diff and this causes the medicine to go straight through my system without working.
NaomiMemberHi Lydia and Cindy:
I have been on REV since 11/03. Added exjade Apr 06 and all sorts of trouble broke loose. It caused such diarrhea and then c-diff. I am now on my THIRD bout of c-diff. This causes the revlimid to go right through my system and it is not able to work the way it should. Prior to Apr I was holding my own with all my counts. They were not up to normal, but were stable and the doc and I were both pleased. Now we are trying to get rid of the constant diarrhea and c-diff.
I even had to have platelet txs (never had any before) and two red cell txs which I had not done since Dec 03.
My opinon is exjade is for the birds and I do not tweet.
Take care and hope you get over the problems
NaomiMemberAleksandra:
I asked the transplant doc about a cord blood transplant when my daughter was carrying twins. He told me that it could not be used for me. She has my blood, her father’s and then add her husband’s into the melee and it would not be good to use the twins cord blood for me.
Maybe some other doc would look at it differently and it would be worth a try.
I don’t know if her age would make a difference in Poland, but would be a consideration in the US
NaomiMemberI have been on revlimid since 11/03. I recently had a set back (I think it was from exjade) but am now once again, tx free. My counts are coming back up. It has been a very good drug for me. My side effects are tolerable. I have beaten the longevity estimates with the revlimid.
NaomiMemberkls:
When you go on a trial there are parameters that are set up by the drug co. These must be followed or you can’t start or continue on the trial. I had to stop my revlimid when I fell below certain counts, but then started back when they came up.
NaomiMemberI was diagnosed Sept 2000 at age 66. I had symptoms earlier, but thought it was just getting older. Little did I know. I had a tendency to be anemic through out my earlier life.
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