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Update [Luspatercept - Beyond Trial for NDT]

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dq:

--- Quote from: dq on August 27, 2018, 11:49:33 PM ---Hello Andy, good point - what brings that to mind..? Sounds like your heading towards something interesting...

--- End quote ---

Hello again, It's good news to see that your back pain might be something completely different.
Sometimes back pain and Abdominal pain can be linked to constipation I believe. Are you presently having troubles passing stools (going to the toilet)?

"I found my friends who got placebo once they have switched to real (open label), they have outstanding improve in Hb in just a few days. the common symptom is bone pain (hip) in a couple days and it gone after that Hb is jump up."
[You mentioned in your first post above that your friends saw an outstanding improvement while being on Luspatercept, so I was wondering how much in numbers (haemoglobin) was this improvement?]

p.s. Please let us know how your MRI goes.. Good luck.

Andy Battaglia:
dq, another case where the patient was in the Luspatercept trial and didn't respond made me wonder. I have to follow up with her to see if her trial is finished and if she learned if she had the real drug or the placebo. She lives with a chronically low Hb because of a hard to match blood type, so I wondered if the low starting Hb was a factor.
I also want to hear what the developers of Luspatercept have to say to explain non-responders. I hate to speculate but wonder if individual genotypes make a difference.

Andy Battaglia:
Than, the pain could still be from EMH masses, as they will take time ti disappear once the Hb is kept at a high level and not allowed to drop. Obviously, time is required to see if this happens.

Than2499:
Hi dq and Andy,

My back pain is no more since I keep 13Hb for a while. I already have MRI on spine last week and I will go to see my doctor for MRI result in this Friday.
I will update my MRI result and my friends who are ongoing Luspatercept.

I don't have problem constipation. On the other hand I have problem with upset stomach. It happen every morning or 30 min after i have a breakfast (fist meal of the day).

catchR:
Celgene Corporation and Acceleron Pharma Announce U.S. FDA Accepts Luspatercept Biologics License Application in Myelodysplastic Syndromes and Beta-Thalassemia

U.S. Food and Drug Administration grants priority review for beta-thalassemia indication and sets target action date of December 4, 2019

U.S. Food and Drug Administration sets target action date of April 4, 2020 for myelodysplastic syndromes indication

Luspatercept EU Marketing Authorization Application also validated

https://www.businesswire.com/news/home/20190604005548/en/Celgene-Corporation-Acceleron-Pharma-Announce-U.S.-FDA

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