My understanding is that the patent for daratumumab, the active ingredient, runs out next year, but the patent for Darzalex, which is the drug given intravenously or subcutaneously, lasts until the 2030s. A trial for a biosimilar of the subcutaneous form is still under way but and will conclude...
See here:
https://www.s4me.info/threads/norway-plasma-cell-aimed-treatment-with-daratumumab-in-me-cfs-haukeland-university-hospital.44450/page-9#post-638427
What about CD38 CAR-T cell therapy? Hypothetically speaking.
https://jhoonline.biomedcentral.com/articles/10.1186/s13045-021-01170-7
https://pubmed.ncbi.nlm.nih.gov/37039305/
I think I've asked this question before, but would Isatuximab be a good alternative for dara non-responders? Assuming that NK cell count is critical and isatuximab doesn't depend on it as much.
Abstract
Background: There is now evidence that specific subgroups of patients with Myalgic Encephalomyelitis / chronic fatigue syndrome (ME/CFS) suffer from a neuro-psychiatric-immune disorder. This study was carried out to delineate the expression of the activation markers CD38 and human...
Patient 5 is the one who initially responded to the treatment and then relapsed relatively quickly. She had 169 NK cells at baseline. In this chart it almost looks like natural fluctuation
Update of the ME/CFS Research Register: Norway and Iceland
The ME/CFS Research Register now includes an overview of the research landscape in Norway and Iceland. In addition to ME/CFS research in Germany, Austria, Switzerland and the Netherlands, the Register now covers research projects...
It read to me as if in Utiskt's ideal and imo highly restricted world my doctor would discourage or prevent me from trying off-label drugs if they haven't been trialled specifically for ME/CFS, but perhaps I misunderstood.
If I take one drug at a time and have a stable baseline or a specific symptom that bothers me, I can usually tell whether it’s making a difference. I’m happy to trial (low-risk) drugs if there’s a chance I could regain some functionality. For someone mild/moderate, the potential benefits...
I don’t think we know enough about ME/CFS to justify a blanket ban. If some meds help some patients, they should be available off-label. Everyone has a different risk appetite, and that choice should be the patient’s, not imposed on them.
Some people report improvements of certain symptoms from...
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