Thalassemia Patients and Friends

Discussion Forums => Thalassemia Major => Topic started by: Katerina_Mall on July 15, 2015, 05:54:00 PM

Title: Luspatercept ??
Post by: Katerina_Mall on July 15, 2015, 05:54:00 PM

I would like more information about this drug please

what is it about? does this mean no more transfussions?

would we be doing this on our own like we do our desferal or would we have to go to hospital and have this done?

im excited but at the same time comfused 

Title: Re: Luspatercept ??
Post by: Andy Battaglia on July 16, 2015, 02:13:43 AM

Hi Katerina,

Luspatercept is in trials. The early trial had very good results. All patients had a decrease in transfusion requirement of at least 60%. The trial was short, so we won't know more about how well it works over longer periods of time until the next phase of trials is completed.  It is administered by IV once every three weeks.

There are some previous posts about this at http://www.thalassemiapatientsandfriends.com/index.php/topic,5303.msg49810.html#msg49810 and http://www.thalassemiapatientsandfriends.com/index.php/topic,5308.0/highlight,luspatercept.html

Title: Re: Luspatercept ??
Post by: Katerina_Mall on July 16, 2015, 11:02:31 AM

ty Andy

Title: Re: Luspatercept ??
Post by: kaleem on August 17, 2019, 12:46:28 PM

I read on various websites that some companies were marketing authorization for Luspatercept in Europe.. Any one knows any further update when this medicine will be available for sale ..

Title: Re: Luspatercept ??
Post by: Andy Battaglia on August 17, 2019, 07:04:13 PM

It's also on the road to approval in the US. The drug was fast tracked, so the approval process should be expedited.

Title: Re: Luspatercept ??
Post by: kaleem on August 19, 2019, 12:26:41 AM

Thanks Andy for the information, hopefully will soon get approved in US.. I have not found any info if the medicine is available for patients in Europe so far.. the only news was related to its marketing authorization by a company.. 

Title: Re: Luspatercept ??
Post by: whiterose on October 06, 2022, 11:25:32 AM

Hi,
Do we have any update on Rebozyl/Luspatercept ? When can we get it ?
I'm from india. I dont find it anywhere(online/offline).

Title: Re: Luspatercept ??
Post by: Andy Battaglia on January 07, 2023, 08:01:58 PM

There is a video of of recent webinar discussing Luspatercept that can be seen at https://www.youtube.com/watch?v=u34iA1z-2pY&ab_channel=ThalassemicsIndia

I assume that it is coming to India and we can hope that it will be made affordable to patients.

Title: Re: Luspatercept ??
Post by: whiterose on May 15, 2023, 06:57:20 AM

Hello Everyone,

I think ROJUZDA is being used in Indian community . Requesting some reviews whoever is using it. What are the side effects, transfusion frequency after injections, cost ,availability , precautions ?

Thanks

Title: Re: Luspatercept ??
Post by: Andy Battaglia on September 09, 2023, 08:11:11 PM

This is the same drug as Luspatercept, which has been used with some success by many US patients. It does not suit everyone or work for everyone, but it is definitely worth trying to see if it can help individual patients maintain a higher Hb level and reduce their transfusion needs.