ChookityPop
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And improved? Or not improved? for autoimmunity or other health issues.
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Anyone on here given Rituximab/ other chemotherapies or Darattumumab?
- Thread starter ChookityPop
- Start date
If I am not mistaken, Ron Davis' son (Whitney Dafoe) was given Rituximab and worsened.
https://www.healthrising.org/blog/2021/06/28/whitney-dafoe-seve
Whitney was teetering when ME/CFS’s great hope at the time, sent him over the cliff.
After Rituximab, he was in a different situation entirely. Before Rituximab, he would overdo it, rest, and more or less return to baseline. After Rituximab, it was if once his reserves were used up – they were gone. Rest did not result in replenishment. If he overdid it, he would get worse and tend not to recover. This is where Whitney’s story probably diverges from many other people’s with ME/CFS.
He quickly developed new symptoms (pain in his leg muscles, unable to speak, hardly able to text, had difficulty tolerating small amounts of stimuli). He was still ambulatory, though, and was able to walk out to the yard or kitchen, and then later relied upon a wheelchair.
Whitney’s Rituximab downturn highlighted the powerful role the immune system is playing in his illness. While Rituximab is generally regarded as a powerful, but generally safe drug, it does deplete B-cells, and can induce low white blood cell and IgM/IgG levels, and probably many things we are unaware of.
Whitney’s Rituximab experience also points out how heterogeneous a group we are. While we now know that Rituximab is not a suitable treatment for ME/CFS, some people did get better on it.
About a quarter of the patients taking the drug in the phase III trial experienced a “serious adverse event” which required hospitalization, but because 19% of the placebo group also experienced a “serious adverse event”, the vast majority of which also required hospitalization, the drug didn’t appear to be causing significant problems. The authors concluded that “few (of the) serious adverse events had a suspected or probable relation to the study drug.”
While it’s frightening watching someone descend into the kind of hell that Whitney fell into, note that Whitney’s big crash was triggered by a bad reaction to a powerful autoimmune drug – something most people with ME/CFS/FM will never experience.
https://www.healthrising.org/blog/2021/06/28/whitney-dafoe-seve
The Big Hit
Then the autoimmune drug Rituximab (Rituxan) apparently threw his immune system into disarray, and he fell off the cliff.
Whitney was teetering when ME/CFS’s great hope at the time, sent him over the cliff.
After Rituximab, he was in a different situation entirely. Before Rituximab, he would overdo it, rest, and more or less return to baseline. After Rituximab, it was if once his reserves were used up – they were gone. Rest did not result in replenishment. If he overdid it, he would get worse and tend not to recover. This is where Whitney’s story probably diverges from many other people’s with ME/CFS.
He quickly developed new symptoms (pain in his leg muscles, unable to speak, hardly able to text, had difficulty tolerating small amounts of stimuli). He was still ambulatory, though, and was able to walk out to the yard or kitchen, and then later relied upon a wheelchair.
Whitney’s Rituximab downturn highlighted the powerful role the immune system is playing in his illness. While Rituximab is generally regarded as a powerful, but generally safe drug, it does deplete B-cells, and can induce low white blood cell and IgM/IgG levels, and probably many things we are unaware of.
Whitney’s Rituximab experience also points out how heterogeneous a group we are. While we now know that Rituximab is not a suitable treatment for ME/CFS, some people did get better on it.
About a quarter of the patients taking the drug in the phase III trial experienced a “serious adverse event” which required hospitalization, but because 19% of the placebo group also experienced a “serious adverse event”, the vast majority of which also required hospitalization, the drug didn’t appear to be causing significant problems. The authors concluded that “few (of the) serious adverse events had a suspected or probable relation to the study drug.”
While it’s frightening watching someone descend into the kind of hell that Whitney fell into, note that Whitney’s big crash was triggered by a bad reaction to a powerful autoimmune drug – something most people with ME/CFS/FM will never experience.
Judee
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What I f'ing hate about these studies is they often don't clearly disclose the placebo, and they don't consider the potential harmful effects of a placebo, especially in ME/CFS where paradoxical interactions can often occur. Even just the infusion process here would likely crash me for months. In addition, the placebo was NOT saline, which isn't mentioned in the abstract. They used Tylenol, Zyrtec, AND dexamethasone.
Judee
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Wow.
BrightCandle
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Even Saline is a bit of an issue for control where 50% of the patients likely have POTS since it will treat it to an extent. To use anything as control for ME/CFS you really have to establish its null impact compared to doing nothing and I suspect nothing is the only null for us because the mere act of an infusion involves a lot of exertion.
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Treeman
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Not me. But I copied the below and pasted it as it maybe of some use?
Rituximab is a type of targeted cancer drug called a monoclonal antibody. Monoclonal antibodies target proteins on the surface of cancer cells. Rituximab targets a protein called CD20. CD20 is found on white blood cells called B cells.
Rituximab works by attaching itself to all the CD20 proteins it finds. Then the cells of the immune system Open a glossary item pick out the marked cells and kill them.
@Gingergrrl was treated with Rituximab but she had proven autoimmunity problems.
Hoosierfans
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It was @Learner1. Her amazing doc utilized a very smart protocol in the RIGHT order — first testing for and clearing infections, second giving her IVIG to correct her CVID and then (and ONLY then) giving her Rituximab — interspersed w IVIG at the same time if i recall correctly to protect against any immune system issues / susceptibility to infections that might happen w the Rituximab.
She’ll correct me if I’m wrong but I’m pretty sure that was the protocol.
Dude
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Apparently a German oncology doctor seems to be trying rituximab for mecfs and longcovid. However, I don't know whether this is in a study or off label.
This is definitely off-label.
This is this doctors reasoning to vouch for such a treatment: https://habets-aachen.com/wp-content/uploads/2023/09/Stellungnahme-zu-Rituximab.pdf (uploading your one page long reasoning on your personal webpage rather than scientific studies or study protocols is never a good start, as it seems to be supposed to be appealing to patients rather than have any scientific value).
This doctor seems absolutely certain that GPCR-aab play the central role in Long Covid and ME/CFS. Let's see if this doctor responds to some of the questions people have asked him www.twitter.com/pausedME/status/1714914901133852958. At least we can give a lot credit to him for actually doing something and wanting to treat people with LC and ME/CFS instead of just waiting around, he also doesn't seem to make any promises and is cautious, which are good signs. Let's hope there come days when patients don't have to resort to this.
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Rufous McKinney
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at some point, my lymphoma diagnosis will possibly require treatment. Probably rituximab.
I don't know what I"ll do when that day comes...
I don't know what I"ll do when that day comes...
Dude
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There is a woman from Germany who is currently trying rituximab for CFS. I'll link to her Twitter account for those who want to follow.
At least 1/6 patients improved dramatically in the ongoing daratumumab pilot. Improving from moderate-severe to mild. She was ill for decades and experienced no response to rituximab and a small and temporary response to cyclophosphamide. We know it does not work for everyone, but they have completed treatment with six patients and chosen to recruit another four. I doubt they would continue unless at least 2/6 saw some benefit.
These papers outline the logic of using daratumumab and a couple of successful pilots with Bortezomib which also kills long lived plasma cells. They think rtx or belimumab will be necessary to prevent plasma cells repopulating which was the case following bortezomib.
https://patents.google.com/patent/WO2021038097A1/en
https://pubmed.ncbi.nlm.nih.gov/34263741/
The number of people who had improved and worsened six years after rituximab and placebo treatment was near identical (in both groups more people improved). Whitney was very unlucky and if we ruled out every treatment that has ever caused a lasting worsening to an ME patient that would mean most of them.
As well as the successful cyclophosphamide trial there are several other positive anecdotes.
I have done two doses of cyc. It is too soon to expect results, but I am tolerating it better than I expected. I will keep updating my thread.
I saw a post on Reddit of someone who had years of full remission following cisplatin. He relapsed after a very stressful time.
These papers outline the logic of using daratumumab and a couple of successful pilots with Bortezomib which also kills long lived plasma cells. They think rtx or belimumab will be necessary to prevent plasma cells repopulating which was the case following bortezomib.
https://patents.google.com/patent/WO2021038097A1/en
https://pubmed.ncbi.nlm.nih.gov/34263741/
The number of people who had improved and worsened six years after rituximab and placebo treatment was near identical (in both groups more people improved). Whitney was very unlucky and if we ruled out every treatment that has ever caused a lasting worsening to an ME patient that would mean most of them.
As well as the successful cyclophosphamide trial there are several other positive anecdotes.
I have done two doses of cyc. It is too soon to expect results, but I am tolerating it better than I expected. I will keep updating my thread.
I saw a post on Reddit of someone who had years of full remission following cisplatin. He relapsed after a very stressful time.
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