You may not be aware that I introduced B cell depletion therapy for autoimmune disease in the 1990s. I have treated over 200 patients myself and none developed any new autoimmune disease. Graves disease does occur occasionally, mostly in the context of treating lymphoma where other major immunosuppressives are used in addition. I do not know about Teclistamab specifically though.
My general thought about using teclistamab is that it is not a sensible idea to try something like that when we have so little evidence for it being relevant. Perhaps the more important issue is that if you have a drug like this in the wrong dose you may become immune to it and lose the opportunity of benefit later.
Thank you for the response. : )
I was looking through studies involving f.e. Alemtuzumab and found a couple reporting autoimmunity (particularly Thyroid diseases) as quite frequent long-term side effects:
https://jnnp.bmj.com/content/86/2/208
Now, this is all unfamiliar terrain for me - I'm just another patient forced to suddenly juggle terms I only have a vague understanding of because of the lack of professional infrastructure for this illness. So I don't know what the caveats of these cases are (since you seem to disagree) and whether /how all this applies to Teclistamab.
I don't think there is any analogy. B cell clones (i.e. plasma cell producing clones) do not compete with each other for survival in any relevant sense.
Just to clarify: I wasn't referring to B-cell's competing for each other. What I tried to get at with my ecosystem analogy was that it seemed to me from the studies documenting autoimmunity post immune-reset (depletion therapies, HSCT etc.) that if you erase the entire balance of a preexisting immune systems, other unwanted immune reactions can take hold down the line. But again, maybe this is just a layman reading a pattern into a class of treatments because I don't have the knowledge to differentiate. If you (or someone else) could elaborate on that, that would be much appreciated.
Perhaps the more important issue is that if you have a drug like this in the wrong dose you may become immune to it and lose the opportunity of benefit later.
Inasmuch as we have any relevant evidence that I would take note of it is for daratumumab and that may not be acting by killing plasma cells at all. So Tecli might be completely irrelevant.
Yes, that is a legitimate concern. The treatment in question is not low-dose (like Habets is doing), but of course that still doesn't mean it's a dosage there is any reliable data for. And yes, the viability of this drug resting on a complete unproven hypothesis (LLPC depletion being the key) is an obvious concern as well.
I'm just hoping that given there seem to be numerous people having decided to go through with it, we'll at least get some anecdotal data of the short term effects.
Some misguided sense of wanting to help (despite having no evidence you’re helping), and money.
While I agree that the use of these drugs in this cases is highly controversial, I doubt money has much to do with it in this case. The doctors treating ME/CFS cases are drowning in patients even if they stick to symptom-management. Where I live, the waiting times for appointments with some of these doctors are measured in years.
