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Is Anyone Else Scared of Rituxan?

Misfit Toy

Senior Member
Messages
4,178
Location
USA
I am so happy that Rituxan is helping some with ME/CFS, but I don't know...the thought of taking a chemo type drug for this illness is unnerving.

Does anyone else feel the same? Maybe it's just because I have a hypersensitivity to meds and have other immune diseases, but it just seems so....drastic.

Again, I am happy it works for those it works for and YAY, but wow....it's a little scary.
 

heapsreal

iherb 10% discount code OPA989,
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10,089
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australia (brisbane)
Hope the studies being done on it can work out who is most suited to this treatment .

At the moment i dont think an mecfs diagnosis with current criteria would be accurate enough to work out who is suitable for rituximab . Hopefully thet get it sorted and also have alternative treatments for those who dont fit criteria for rituximab .
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
Yes, I think it would definitely be a drug where you need a lot of blood tests and B cell info on. I for one would never do well on it because of my other conditions. I don't think it's for everyone and it's a super drastic med.
 

Daffodil

Senior Member
Messages
5,875
a doctor i spoke to once said it will cause some unnecessary deaths in CFS patients
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
To me, it's an absolute, "I'm dying, can't function at ALL" last resort.

I get taking it, I do.

I have serum sickness right now from Enbrel, a biologic, with black box warnings.

These meds freak me out.
 

heapsreal

iherb 10% discount code OPA989,
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I believe i have ongoing infections so not keen onknocking out a part of my immune system. I think neutropenia is ccontraindicated for rituximab .

Im on abx more than off for sinusitis and viral symptoms when off antivirals with my last stoppage of antivirals getting shingles . So for me it would be a no.

I'm sure others with high inflammatory markers and autoimmune tendencies and no need for abx or avs are probably a good fit for rituximab .
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
I have the autoimmune component, along with an immune deficient component so that makes it really confusing.

I get infections and also have Sjogrens. I make hardly any lymphocytes and have non HIV AIDS so I have a feeling this would be a no go!
 

5150

Senior Member
Messages
360
The really scary part to me, would be how it might blow out kidneys already overstressed from all other meds.
 

funkyqueen

Senior Member
Messages
123
Location
South of France
a doctor i spoke to once said it will cause some unnecessary deaths in CFS patients

It is obvious that a patient, that will take Rituximab should be fully aware of the risk / benefit.

He should know that it may had, because of it, PML, Steven Jhonson syndrome, and as like any chemotherapy, it increases the risk of cancers / cancer recurrence of 15 to 30% (yes, I know Ritux is more an immunosuppressive treatment as chemotherapy, none the less it is also a chemo;-)). (non-exhaustive list)
It is not aspirin, that's obvious, but then I think that everyone, knowingly, should be able to have the choice to access to it or not.
Should talk about my idea to BigPharma;-)

Otherwise, I'll be curious to know more about what your doctor told you, Daffodil ?
Has he developped, or has he just said it without tell you more?
 
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halcyon

Senior Member
Messages
2,482
Is that doctor by any chance known here?
It's not a controversial statement, a fatal reaction to the infusion is a possibility.1 In addition, there is a risk of developing a fatal infection during treatment.1 2 3 With that said, I have no idea what the actual incidence is of fatal reactions. I imagine it's low.
 
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heapsreal

iherb 10% discount code OPA989,
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10,089
Location
australia (brisbane)
Google rituximab and contraindications there are many infectious contras herpes zoster, cmv, hepatitis and many other active infections. Im guessing immunoglobulin defiencies , neutropenia ? ?
 

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
FDA Weighs the Risks of Rituxan
Drug for Treating Lymphoma Is Linked to Cases of Fatal Brain Disease

The Food and Drug Administration is discussing whether patients on the widely used cancer drug Rituxan should use it for a shorter period or take breaks, in light of reports linking the drug to dozens of cases of a rare and usually fatal brain disease, FDA officials said.
A study released in March in the medical journal Blood linked Rituxan to 57 cases of progressive multifocal leukoencephalitis, or PML, between 1997 and 2008.

In PML, the white brain matter decays, provoking memory loss, speech disorder and disorientation. Charles Bennett of Northwestern University and colleagues have been collecting cases in a study called Radar, which identified the 57 PML cases. Of those, 51 died. The median time between their diagnosis and death was about two months.

Genentech said in a statement: "The potential contribution of Rituxan to the development of PML is unknown; however, it cannot be excluded."
While Rituxan has been linked to a higher number of PML cases, Dr. Bennett isn't calling for it to be pulled from the market because he says it is frequently the best option for patients with life-threatening cancer. There are typically more options for patients with rheumatoid arthritis, another ailment which Rituxan is approved to treat.
The cancer doctors at Northwestern who published the article in Blood suggested that the FDA should restrict use of Rituxan in patients who don't have life-threatening disease until more is learned about PML.

"This drug isn't aspirin, and shouldn't be given willy-nilly to patients who don't have a fatal disease," said Dr. Bennett.
 
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adreno

PR activist
Messages
4,841
It's only reasonable to be worried about any drug with serious risks and side effects. It always comes down to a cost-benefit analysis. At the moment I wouldn't risk it, but I understand if others would.
 

msf

Senior Member
Messages
3,650
From a patient's point of view, the Rituximab trials seem kind of back to front: it has not yet been established whether ME is an autoimmune disease, an infectious one or both; Rituximab is contraindicated in the case of some infections; the evidence for it being a autoimmune disease rests, in part, on the fact that some patients respond to Rituximab. I would be interested to know whether Rituximab has been used in any other diseases without a specific target in mind.
 

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
At the moment i dont think an mecfs diagnosis with current criteria would be accurate enough to work out who is suitable for rituximab . Hopefully thet get it sorted and also have alternative treatments for those who dont fit criteria for rituximab
Yep, that's one of the biggest issues. Too many subtypes and no clear test or biomarkers to base a reliable diagnosis on.