My 9 years old son has been taking Tamoxifen for 2 months now. He is taken care of by a wonderful team in Hadassah Hospital, Jerusalem.The drug considerably improved his condition: He can walk far longer, better and has more energy overall. And there are no side effects.
Just wanted to share.
Dear Galia Ben Ishay,
Can you please share to me the dosage of Tamoxifen to your son? My son is now 49.4 kg, and he is 9. I would like to know how many mg my son should take per day. Thank you so much for your information.
Gloria Chen (from Taiwan)
I give him 20mg every evening. I don't know if you can get it without prescription.
Dear Galia, how is your son?Are you still taking tamoxifen?Your post inspired me very much
Could you share the range of CK values your son has had? I have not been able to find a range of CK values for Becker.
taylan çakır said:
- Dear Galia Ben Ishay, 3-year-old son was diagnosed with BMD.47-48 exons detected deletion.Doktor said that the BMD is light but I worry too much for my son .. I have read thrilledly about your writing on temoksifen and I will have questions, 1) how much ck has fallen since using tempexifen, what was the ck value before, now how much? 2) does your son continue to improve, what changes do you observe in his or her gait and movements? 3) Do you have information about the status of other patients using tempexifene? 4) cortisone medications have periodic improvements, are you the effect of these cortisone drugs or the effect of temoksifenin? Exactly how much ck has fallen, if you write the obvious changes you observed in your son ... I wish for urgent healing and patience .. Thank you in advance for your reply ..
Dear Alex and Sulthana,
My son is stable, not better nor worse. I stopped giving him steroids (deflazacort) because there were only side effects, no benefits anymore.
All the best,