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I'm an MDS-RA -5q who responded intially to your input. My hemo discouraged me from trying NAC but I decided to start it anyway on or about 4/25 using 900 mg daily. Since early 3/03 i've been on Neupogen (300mcg) at first daily and now once maybe every 5 or 6 days plus 60,000 units of Procrit once a week. Evidently the synergistic effect is working because my hemoglobin has gone from 9.6 (2/21/03) to 10.1 (3/26/03) 11.0 (4/28) 11.8 (5/27)
How much this is attributable to NAC's help i can't ascertain but something curious has happened. I've never (age 56) been able to have "fingernails" they always broke easily once they grew beyond the quick. Since the NAC (and since i started the NAC 2 months after using both Procrit and Neupogen it seems reasonable to conclude it was the NAC) my fingernails are strong and long. I noticed this after being on NAC a month. Very curious. No diet change. I'm feeling much livelier with the higher hgb, have even gone some days without a nap. I like the NAC and plan to continue using it indefinitely. Thanks for putting me onto it. Can't prove it's helping the MDS but it's not hurting.
Update: Wish I had more encouraging news but my hemoglobin has dropped from 11.8 to 10.9 after being off Procrit for only 2 weeks. I took NAC daily on the "hiatus". (note: this individual is still taking NAC despite this report)
Thank you again for all. I will write you with more time next time, and I will tell you all treatments for MDS that my father was tried (amifostine, thalidomide,
etc.) in those 6-7 years...
But I am writing because last year, my father has began a treatment with a doctor (functional medicine) ,that gave him a lot of vitamins, plants, and a lot of things...and he changed all his food. He keeps without transfusion from February to October 2002...all those stuff and Eprex 60000 units a week. Then he didn't continue this treatment , because it is to far from Sao Paulo 6 hours driving, very expensive and he woud like to eat again normally.
The year before, even with the same quantity of Eprex, he had transfusions every 4 or 5 week. I supposed that there was something (in the last treatment), or many things that togheter has kept HB around 9.5 or 10 for those months. Then, I used to read about MDS, like you do, and I read in the forum about NAC... I found it very interesting.
I live 2 hours from my parent's home, so on the next day, I went to Sao Paulo, and I checked every product that my father took last year (more than 50 a month) and I found that every month with a different dose he had been taking NAC (from 100 to 250 mg/a day). I thought, maybe it was NAC that keeps the HB.
Well, I had printed all your articles, and I went to the hematologist of my father and I showed them to her...She said ok, we will try 600 mg/day + 60,000 units of Eprex. I really dont know yet , but he had the last transfusion 4 weeks ago, and he felt better, and every day he takes 600mg of NAC. He just called me now and
said I think that NAC is working... I will write you after the next analysis, to see how his HB is going.
...Thank you again for all. I forget to tell you my father is a doctor of neurosurgery, he is 71 years old, he has MDS with ringed sideroblasts. I am a biologist and I have a lab of micropropagation of plants.
Note: I have removed the names and email addresses from these correspondences in order to prevent unwanted correspondence.
copyright Sean Dennis, February 11, 2003
last update, August 13, 2003