New German Trial for Rituximab? (High Dose)

[siobhanfirestone]

OK, but in general the side effects of rituximab are nothing like ME. ME patients may well get PEM from the rigmarole of having an infusion, so I don't see that as to be blamed on the drug itself.

I think thats very hard to extract, and in all honesty when i see you say things such as "cyclo may have worked because it stopped cancer fatigue" it makes me worried that there is not a comprehensive understanding of the experiences of Long COVID and ME patients here if im honest.

From my understanding Mabs can and likely often induce "fevers", or essentially "flu" feelings, even noted in RA patients:https://www.medicinenet.com/side_effects_of_rituxan_rituximab/side-effects.htm . In addition to this patients can get allergic reactions to the infusion that is usually managed by nurses well, and is why she did a 10 hour infusion I can imagine: https://www.ncbi.nlm.nih.gov/pmc/ar...mine, leukotrienes and prostaglandins release. (this is worst case scenario from what I can see)

Leaving out brain fog which seems different in ME, this likely feels like a brief period of worsening for some due to similarities with PEM for some. We also sadly know that Ritux caused some perm worsening for a few.

My main issue with this german doctor is that he does not seem to be documenting things well, rather at an ad hoc basis. We really need so much more data in terms of patient experiences, with stories like @Marky saying the private group knew how to log PEM VS side effects well, this should be standard practise tbh. Therefore the true effect of this micro "trial" is going to be very tough to work out, and we will continue to have to rely on scattered reports

 

[Jonathan Edwards]

it makes me worried that there is not a comprehensive understanding of the experiences of Long COVID and ME patients here if im honest.

Well, I would hope that nobody claims to have a comprehensive understanding of that, especially when we are talking of very heterogeneous presentations. It is not even clear that Long Covid is a useful category beyond ME after Covid.

From my understanding Mabs can and likely often induce "fevers", or essentially "flu" feelings, even noted in RA

Yes, they do. I saw it fairly often. But not the slightest bit like ME. In general the symptoms lasted 12-48hrs at most and were very monophasic and within a few days of infusion at most. So nothing like ME. Lots of diseases have similar symptoms if you take them in the abstract without considering the time frame and context. Nobody could diagnose anything unless one was a bit more detailed in the analysis.

In addition to this patients can get allergic reactions to the infusion that is usually managed by nurses well,

Or in my case for the first few cases, me, since I was the nurse. I made up the infusions and sat by the patient to monitor pulse and blood pressure all day. I trained up a team of nurses to know what to look for.

this likely feels like a brief period of worsening for some due to similarities with PEM for some.

Again, the sort of analysis just isn't complex enough, I am afraid.To call an episode 'PEM' requires a very careful consideration of context not just for that episode but for episodes over time for that person. Sure an episode of feeling like flu might be quite similar to someone's PEM but that doesn't mean one would call it that in the context. Clinical medicine doesn't work like that. Nausea can occur for a hundred reasons. If someone eats bad fish and gets nausea and two other people eating the same fish got nausea then you are pretty sure it has nothing to do with whatever diseases these people might otherwise have.

We also sadly know that Ritux caused some perm worsening for a few.

No we do not. Single case stories in this context are as useless as the PACE trial because you cannot attribute cause without adequate control information.

 

[siobhanfirestone]

Well, I would hope that nobody claims to have a comprehensive understanding of that, especially when we are talking of very heterogeneous presentations. It is not even clear that Long Covid is a useful category beyond ME after Covid.



Yes, they do. I saw it fairly often. But not the slightest bit like ME. In general the symptoms lasted 12-48hrs at most and were very monophasic and within a few days of infusion at most. So nothing like ME. Lots of diseases have similar symptoms if you take them in the abstract without considering the time frame and context. Nobody could diagnose anything unless one was a bit more detailed in the analysis.

except i have taken a mab, not ritux in fairness, and it was EXACTLY like PEM fever/fatigue? so again i say, the dirth of data is the issue, and unless you were using rituximab in ME patients im not sure how you would know this, we find this out from these patients and the trials undertaken no?