Trial Report Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS -a clinical pilot study, 2025, Fluge et al

Tyler Hulett said:
So the 'worsener' / failed responder is interesting. It's this one with the bad clinical scores a year out:
View attachment 32270

This also happens to be the 'responder' with the most yellow dots - ie this person got a whole 'new set' of autoantibodies induced by the therapy. So that would totally fit with them being 'ok before' and 'not so ok after' - they don't look as bad on pre post autoab delta as they dont really have 'more autoabs' post therapy - but they have very different ones.

It looks like Dara wipe out this person's autoantibodies - and worse ones (for them at least) took their place. Immune reset doesn't mean things get better necessarily...
View attachment 32269
Click to expand...
I think she only relapsed after around 2 years, rigjht?
 
@ryanc97
Did you by chance also ask people for their onset? F&M will again only look at a defined onset based on their immune trigger theory.
Hopefully, Charite will include some gradual onset patients in their studies.
 
oedi said:
Yes, I had very bad reactions to each dose but it's hard to say if it was steroid induced or not. I've taken steroids before, always crashed but recovered in a week or so. After recovering from dose 1, I took dose 2 three weeks later (I was not well enough to take it 2 weeks after). I crashed again, then started to notice some energy increase for a week or so, but then really began to decline after that.

I took half the recommended steroid dose for dose 2 thinking it would be best to avoid the steroid crash, but perhaps this induced some cytokine storm which has led to my present condition.

Male, 39 y/o, sick since 2/28/24
Click to expand...

I am sorry this happened to you, but from my experience, as a female who also did Dara (i did 3 doses, 8 weeks now, no change right now), I think this might be from steroids, because it was for me...
For me, dara was easy peasy, it did nothing for now but 3rd dose I did without any steroids, because first 2 doses steroids K I L L E D me.
So my background, is, that from regular IVIG (1g/kg on avg per month) i recovered from walking 300-400 steps a day for over 10 years, or even less, to walking 10km a day, or 15km, and being able to travel anywhere, even alone... and then I did dara and steroids (in that condition, I obv still have many complaints so I chose to do it... ) .... and my reaction to steroids is so severe that I could walk for 4+ weeks only 100 steps a day, and had adrenal crisis, lost my period, BP 80/40, constantly feeling like i am in some dream ... It took 4 weeks to bounce back from steroids, despite my quite high baseline! after 4 weeks, I was still at 100 steps a day and NEVER leaving house. And I did only 92mg prednisone total 1st dose of Dara, and 60mg 2nd dose. It was a nightmare, for 4+ weeks I ate 600kcal a day, anorexia symptoms, 80/40 BP, weird responses to salt, so weak i walked 100 steps a day would be avg or less, ... and what is the worst part is that steroids mimic my old symptoms (pre-IVIG) like very disturbed circadian rhythm (like i am living on Mars), my body totally collapse, it mimicked MECFS....
4 weeks later, I got menstruation (3+ weeks delay from the steroids), and after that, my adrenals bounced back too.
So the horror was definitely not related to dara but to steroids, and I am wondering if something is seriously wrong with my hypothalamus to have this severe shutdown (and yeah, I remember reading there could be autoantibodies against hypothalamus?!).
These crises were nearly life-threatening for some days in those 4weeks. I also got psychiatric side effects of steroids that were also life-threatening but i think that's separate from these 'MECFS' /adrenal...ie , one can have only one

TLDR: it wasn't dara. It was steroids and I assume if my baseline wasn't so high step count, I'd crash for much longer.
 
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Pibee said:
I am sorry this happened to you, but from my experience, as a female who also did Dara (i did 3 doses, 8 weeks now, no change right now), I think this might be from steroids, because it was for me...
For me, dara was easy peasy, it did nothing for now but 3rd dose I did without any steroids, because first 2 doses steroids K I L L E D me.
So my background, is, that from regular IVIG (1g/kg on avg per month) i recovered from walking 300-400 steps a day for over 10 years, or even less, to walking 10km a day, or 15km, and being able to travel anywhere, even alone... and then I did dara and steroids (in that condition, I obv still have many complaints so I chose to do it... ) .... and my reaction to steroids is so severe that I could walk for 4+ weeks only 100 steps a day, and had adrenal crisis, lost my period, BP 80/40, constantly feeling like i am in some dream ... It took 4 weeks to bounce back from steroids, despite my quite high baseline! after 4 weeks, I was still at 100 steps a day and NEVER leaving house. And I did only 92mg prednisone total 1st dose of Dara, and 60mg 2nd dose. It was a nightmare, for 4+ weeks I ate 600kcal a day, anorexia symptoms, 80/40 BP, weird responses to salt, so weak i walked 100 steps a day would be avg or less, ... and what is the worst part is that steroids mimic my old symptoms (pre-IVIG) like very disturbed circadian rhythm (like i am living on Mars), my body totally collapse, it mimicked MECFS....
4 weeks later, I got menstruation (3+ weeks delay from the steroids), and after that, my adrenals bounced back too.
So the horror was definitely not related to dara but to steroids, and I am wondering if something is seriously wrong with my hypothalamus to have this severe shutdown (and yeah, I remember reading there could be autoantibodies against hypothalamus?!).
These crises were nearly life-threatening for some days in those 4weeks. I also got psychiatric side effects of steroids that were also life-threatening but i think that's separate from these 'MECFS' /adrenal...ie , one can have only one

TLDR: it wasn't dara. It was steroids and I assume if my baseline wasn't so high step count, I'd crash for much longer.
Click to expand...
That is really interesting, maybe this could be the case for others also. You have to take quite a high dose of dexamethasone in the study. Sorry this happened to you, hope you continue to improve!
 
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