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Thalassemia Patients and Friends and thalpal Ā© A. Battaglia 2019





55095 Posts in 5864 Topics by 6145 Members
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A message for all  parents who are thals. Keeping your iron load under control is an absolute obligation to your children.
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Author Topic: Any participants from Luspatercept trials here?  (Read 2115 times)
Sunny2701
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« on: September 03, 2017, 04:44:45 PM »

Hi all, if anybody here has been a participant or knows someone who has participated in Luspatercept trials,  it would be great for all here to know how it has been benefiting them.

I read repetitive content about Luspatercept on the news websites,  but i would be good to know first hand from someone who is already trying and testing it
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Than2499
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« Reply #1 on: September 18, 2018, 12:33:59 AM »

Yes, I am.

My case was unsuccessful. My Hb did not improved. I knew from my doctor, just only me in all trials site around the world that Hb not improved.
Other members in my site have significantly improved since they got real medicine.


     
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Sunny2701
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« Reply #2 on: September 30, 2018, 03:27:04 PM »

Thank you for your post and for sharing your experience. Sad to hear that it did not work in your case. Like you mention other members saw a significant increase, do you know how much HB increase has been noted in such cases? If you don't mind, i would like to understand a few things based on your trial

1. Was it a tablet or intravenous injection? Ot some other method?
2. How was the dosage administered? Quantity
3 how often did you take luspatercept ?
4 from your your experiences and other people you know who are a part of this trial, do you believe this is the medicine thals can look forward to for improving the treatment?

Thanks in advance, have a good day and a nicer tomorrow
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