Teclistamab for ME/CFS

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rapidboson

Senior Member (Voting Rights)
It seems as though Dr. Habets has successfully treated an ME patient with low doses teclistamab. Much more cost effective than daratumumab apparently (< 1000€ per treatment course). This is the German maverick oncologist that's also treated ME patients successfully with daratumumab in the past.

https://twitter.com/user/status/1925124231940989201


Teclistamab is a BCMA directed T-cell engager (i.e. it "tells" cytotoxic t cells to kill BCMA expressing cells). BCMA seems to be present on later stage B cells and long lived plasma cells.

Extremely early and just a clinical anecdote but interesting nonetheless.

Has anybody heard of this in the context of ME before?
 
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I've seen Habets posting that he has treated patients with pretty much anything. Unfortunately his posts also tend to be full with nonsense.

In the post following this one he write: "that is clear you have to remove the spikes with maraviroc, testing spikes in white blood cells and GPCR auto antibodies is standard diagnostics"
 
rapidboson said:
Teclistamab is a BCMA directed T-cell engager (i.e. it "tells" cytotoxic t cells to kill BCMA expressing cells). BCMA seems to be present on later stage B cells and long lived plasma cells.
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Yes, It's aiming at the long lived plasma cells and their precursor cells. With its bi-specific properties it's not only aiming at BCMA but also CD3 T-Cells.
- That makes it more potent than Dara
- it directly uses parts of the own immune system to clear cells
- It goes deeper in tissue and is expected to be more effective in depletion of AAbs than Daratumumab for example

With auto-immune diseases much higher dosages are used, so this is low dosage

Jaybee00 said:
Tecli is definitely not a benign drug—dara much safer.
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The higher dosage have indeed higher risks - than Dara
 
EndME said:
I've seen Habets posting that he has treated patients with pretty much anything. Unfortunately his posts also tend to be full with nonsense.

In the post following this one he write: "that is clear you have to remove the spikes with maraviroc, testing spikes in white blood cells and GPCR auto antibodies is standard diagnostics"
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Yeah, no idea what that is supposed to mean!


Arfmeister said:
With its bi-specific properties it's not only aiming at BCMA but also CD3 T-Cells.
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Yes, the "T-cell engager" part I mention in my first post is referring to the CD3 part :)
I can't speak for anything else you said regarding safety, potency or tissue penetration. I haven't look into it.
 
rapidboson said:
Teclistamab is a BCMA directed T-cell engager (i.e. it "tells" cytotoxic t cells to kill BCMA expressing cells). BCMA seems to be present on later stage B cells and long lived plasma cells.
Click to expand...

wikipedia said:
B-cell maturation antigen (BCMA or BCM), also known as tumor necrosis factor receptor superfamily member 17 (TNFRSF17), is a protein that in humans is encoded by the TNFRSF17 gene.

TNFRSF17 is a cell surface receptor of the TNF receptor superfamily which recognizes B-cell activating factor (BAFF).
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someUsername said:
Btw, there is some evidence that Dara+Tecil Work well together. No Cross toxicity and improved efficacy in cancer patients.
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Do you have any links to studies?
someUsername said:
I think It is Not unreasonable to think that whatever mechanism is responsible for dara and Tecil to Work in CFS
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We don’t know if Dara or Tecil works for ME/CFS.
 
I've been in email contact with Dr Habets since his post on X and he'd been saying that by the end of July he'll know whether it has a positive effect in his case study. If so, he'd recruit more patients.

Just today he sent me some more info. So it seems like he might be seeing positive outcomes in his current case study?

According to the mail (and take with a bucket of salt), they had tried rituximab, belimumab, sotrovimab, casirivimab/imdevimab and daratumumab in previous case studies.

For Dara they'd seen a reduction in autoantibodies and in clinical symptoms, but apparently not long lasting. The current project is low dose teclistamab, starting with 1-2 mg and doing 4 injections (not sure how many mg) with a week in between doses.
 
rapidboson said:
I've been in email contact with Dr Habets since his post on X and he'd been saying that by the end of July he'll know whether it has a positive effect in his case study. If so, he'd recruit more patients.

Just today he sent me some more info. So it seems like he might be seeing positive outcomes in his current case study?

According to the mail (and take with a bucket of salt), they had tried rituximab, belimumab, sotrovimab, casirivimab/imdevimab and daratumumab in previous case studies.

For Dara they'd seen a reduction in autoantibodies and in clinical symptoms, but apparently not long lasting. The current project is low dose teclistamab, starting with 1-2 mg and doing 4 injections (not sure how many mg) with a week in between doses.
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Are they continuously experimenting with dangerous drugs outside trials?
 
Utsikt said:
Are they continuously experimenting with dangerous drugs outside trials?
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I guess dangerous is relative, but yes - it seems like they're doing their own case studies.

Whether the risk is higher than in a pilot trial, like the one Fluge and Mella did on Daratumumab in Norway, I don't know. Less regulated for sure. But clearly still under medical supervision.

In the end, they have to start them somewhere/somehow to generate data and then later on they go into pilot or phase II.
 
rapidboson said:
I guess dangerous is relative, but yes - it seems like they're doing their own case studies.

Whether the risk is higher than in a pilot trial, like the one Fluge and Mella did on Daratumumab in Norway, I don't know.

In the end, they have to start them somewhere/somehow to generate data and then later on they go into phase II.
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When you use a dangerous drug that can cause fatalities, you have to make sure that the data you get from using it has a high enough value to warrant the risk.

I’m not sure the benefits outweigh the risk here.

That’s even without considering the rationale for using the drug, and if it’s possible to test the assumed mechanisms without doing drug trials.
 
hotblack said:
Do they have evidence of autoantibodies in ME/CFS? If they do, that alone would seem interesting.
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No idea. I doubt it, I would assume they're just taking the Fluge/Mella rationale of killing LLPCs.

Utsikt said:
When you use a dangerous drug that can cause fatalities, you have to make sure that the data you get from using it has a high enough value to warrant the risk.

I’m not sure the benefits outweigh the risk here.

That’s even without considering the rationale for using the drug, and if it’s possible to test the assumed mechanisms without doing drug trials.
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Again, "dangerous" is relative, and specifically relative to the dose. 1g of paracetamol will help your headache, 4-5g will kill you. Is paracetamol a dangerous drug - one could argue it is, and yet it's used ubiquitously. But sure, teclistamab sounds like a different league. They do seem to be using much lower doses though. In clinical use, the dose seems to be 1.5 mg/kg and here they use up to 2 mg (per person, not per kg).

I don't know how dangerous/risky it is, but I would guess it's much less likely to cause severe complications than a normal dose.

But of course, inherently risky due to lack of any publicly available data.
 
rapidboson said:
No idea. I doubt it, I would assume they're just taking the Fluge/Mella rationale of killing LLPCs.


Again, "dangerous" is relative, and specifically relative to the dose. 1g of paracetamol will help your headache, 4-5g will kill you. Is paracetamol a dangerous drug - one could argue it is, and yet it's used ubiquitously. But sure, teclistamab sounds like a different league. They do seem to be using much lower doses though. In clinical use, the dose seems to be 1.5 mg/kg and here they use up to 2 mg (per person, not per kg).

I don't know how dangerous/risky it is, but I would guess it's much less likely to cause severe complications than a normal dose.

But of course, inherently risky due to lack of any publicly available data.
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Just because something is commonly used or accepted doesn’t mean that it’s inherently okay.

And it just has to be dangerous enough for the risk to be too high. Many of the potential complications might also be secondary effects, like reduced ability to deal with infections, cancers, etc.
 
Ultimately people are going to have to try some things to see if they work or at least if they can shed more light on what’s going on. Some of those will likely carry risks.

The question for me is not that this is done but how that is done. Is it based upon a mechanistic framework, is there any evidence for that mechanism, are patients fully informed and supported, are things run well and data released etc.
 
Utsikt said:
Just because something is commonly used or accepted doesn’t mean that it’s inherently okay.

And it just has to be dangerous enough for the risk to be too high. Many of the potential complications might also be secondary effects, like reduced ability to deal with infections, cancers, etc.
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And that might show that not everything must be "inherently ok" to be potentially useful.

I'm not advocating for or against the use of teclistamab, I'm just sharing what I heard from the doctor looking into it. I personally believe there is merit in case studies to generate data, if patients are properly informed of the risks and the risks are mitigated as much as possible.
 
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