Would you try Rituximab?

[msf]

Would you have a course of Rituximab infusions if you were offered them today? I just noticed a unfortunate aspect of the use of Ritux in ME - it seems it is not as effective in severe cases, yet these are the patients who would theoretically have the most to gain and the least to lose from it. My ME is only moderate, so at the moment I would want to explore other diagnoses/treatment options before I tried Rituximab. If these failed however, and my condition did not improve or even worsened, I would definitely consider Rituximab, if it was available.

Of course, people's decisions will be informed by research that is yet to be published, but I am just curious to see how many people would try it today given the chance.

 

[Soundthealarm21]

Definitely going to need a lot more research before I consider it.

 

[deleder2k]

@msf, why would you not take it (exclude financial costs), and what other treatment options is there to explore?

 

[SDSue]

Thanks for posting this survey. At the risk of being an obnoxious heckler, I’d like to see more options based on level of severity. (easy for me to say). I think you’d find a large discrepancy between those who are mild to moderate vs those who are more severe.

4 years ago, when I was still able to work some, my answer would have been the same as @Soundthealarm21’s ("Definitely going to need a lot more research before I consider it.”) Now, fluctuating between housebound and bedbound, my answer is a resounding “Bring it on!"

 

[msf]

Deleder2k, I put other diagnoses for a reason, although I am obviously biased as I'm a patient of KDM. I have a Yersinia infection, and if antibiotics get rid of it but I am still ill, I think I would pursue a diagnosis of Chronic Lyme before I tried Rituximab. I am not sure that Ritux is anymore dangerous than taking antibiotics for years, and I doubt whether anyone could say either way, but the idea of getting rid of most of my B-cells worries me more than taking antibiotics (although this worries me too).

SDSue, I wanted more options too, but unfortunately I am still in the Stone Age when it comes to computers. I hoped that people would explain their theoretical decisions in the thread anyway, like you did.

 

[sarah darwins]

I answered 'yes', but the real answer is:

If they can pin down some of the common features of the major responders, and it turns out that I'm likely to be in that category, then yes.

 

[msf]

Hey, you're cheating!

 

[Scarecrow]

I'm a '7' on the PR scale and I answered 'yes'. In a heartbeat.

So much to gain and, it seems, very little to lose.

 

[sarah darwins]

Hey, you're cheating!

lol .. alright, YES!

*under certain conditions, assuming other factors to be equal. This is not a statement of policy nor shall the commenter be held liable for any .... blah etc blah

 

[msf]

Just kidding! I guess another way to phrase the question would be, would you try Rituximab if studies in the next 5 years or so fail to identify who is likely to be a responder and who isn't?

 

[Effi]

What I am worried about are the long term side effects. I know someone who's been on a similar kind of medication for well over a decade (infliximab), and the side effects are pretty much as awful as the disease. You can't try stopping it for while, because you'll become immune to it. But the side effects are just as exhausting and soul crushing as the original disease: catching every little bug or virus around, which in practice means having endless colds and flu; excruciating migraine attacks pretty much half of the time; etc. All this then in turn is attacked by a.o. endless courses of antibiotics, because if not treated the cold/flu gets worse and worse and you end up in hospital for weeks. I'm not an expert of course, and this story is about a different (though similar) medication, but I have seen this person suffering for years on end. It might look great on paper, but reality is not so great for everyone. They've been testing rituximab for a couple of years on ME patients now, but not long enough to be able to understand the long term effects...

OTOH it's not like we have a lot of other options... It does sound very appealing, almost like 'the instant cure', when you read the stories. But is that realistic long term? I think nobody knows the answer to that...

 

[Scarecrow]

I know someone who's been on a similar kind of medication for well over a decade (infliximab), and the side effects are pretty much as awful as the disease. You can't try stopping it for while, because you'll become immune to it.

I don't think that's true of rituximab.

Both rituximab and infliximab are monoclonal antibodies but a quick google shows that infliximab works against TNF-a, i.e. they have different targets.

 

[msf]

Well. that seemed to be the case with a couple of the patients in the study, although it wasn't established whether they had more infections than they did normally.

 

[SDSue]

SDSue, I wanted more options too, but unfortunately I am still in the Stone Age when it comes to computers. I hoped that people would explain their theoretical decisions in the thread anyway, like you did.

I’ve never even tried to create a poll, (that I remember anyway lol) so you’re already way ahead of me! Thanks.

 

[snowathlete]

Yes, I would if I only I could.
I don't really fancy waiting another five to seven years for the NHS to offer me it, but there isn't much of an alternative. The need for ongoing doses makes it very difficult to access privately.

The research to date has been very good, in my opinion. Rituximab fits with a lot of what we know about the disease already. It has some risks but the liklihood of a severely negative result isn't that high. And finally, and importantly, when I take account of what having this disease without treatment means to me, it is an easy decision. My life has become a non-life. Everything about me has been laid to waste. My daughter is four and I have hardly been able to play with her at all. And there is a fair chance that I will lose my home -- my family's home -- before I get treatment, possibly even this year if the UK govt do deliver on their promise to restrict the paltry support they give to me currently. So yeah, I'd have it today if I could.

 

[MeSci]

I would not try rituximab, and probably not any other new(ish) drug either. I have two main reasons.

1. Anyone taking one of the newer drugs is effectively acting as a 'guinea pig' with regard to long-term adverse effects, as they are simply not all known. Some are already known for this one, and I do not wish to experience them.

2. I am a vegan and will not knowingly use any product that has involved harmful animal use in its production. It appears that rituximab does involve such use.

It is almost impossible to avoid using drugs which have been developed using animal experimentation, against which my views are both ethical and scientific, so I probably do use some of these, often inadvertently, just as I am forced to consume lactose as it is a constituent of so many medicines.

But this drug, and probably other similar ones, appears to go further with regard to animal use.

My activity level is 6, and the illness is bearable, helped by my supplements and diet. I don't know whether I might feel differently if, like @snowathlete, I were still under threat of destitution due to welfare cuts, but I will reach state pension age next year.

 

[deleder2k]

What I am worried about are the long term side effects. I know someone who's been on a similar kind of medication for well over a decade (infliximab), and the side effects are pretty much as awful as the disease. You can't try stopping it for while, because you'll become immune to it. But the side effects are just as exhausting and soul crushing as the original disease: catching every little bug or virus around, which in practice means having endless colds and flu; excruciating migraine attacks pretty much half of the time; etc. All this then in turn is attacked by a.o. endless courses of antibiotics, because if not treated the cold/flu gets worse and worse and you end up in hospital for weeks. I'm not an expert of course, and this story is about a different (though similar) medication, but I have seen this person suffering for years on end. It might look great on paper, but reality is not so great for everyone. They've been testing rituximab for a couple of years on ME patients now, but not long enough to be able to understand the long term effects...

OTOH it's not like we have a lot of other options... It does sound very appealing, almost like 'the instant cure', when you read the stories. But is that realistic long term? I think nobody knows the answer to that...

I don't think you can compare the side effects of Infliximab and Rituximab. Infliximab is a TNF-α inhibitor. Rituximab neutralises B-cells. "endless colds and flu" is not common, and migraine "half of the time" is not the case.

I would advise anyone worrying about Rituximab side effects to read professor Jonathan Edwards' posts about it.
There is not much point in debating whether to take something if one don't know the gravity of possible side effects.

I'd like to quote a line from the published study "There were no severe or unexpected side effects from rituximab maintenance treatment in this study."

My question is; what is the side effects of having ME? We know elder people with ME suffers from an increased chance of B-cell lymphoma. We know that we probably suffer from an endothelial dysfunction, which are linked to increased chance of heart diseases, diabetes++. Rituximab is used routinely for R.A, Lupus and others.

Even though it is early I would argue that the side effects of having ME is a bigger threat than side effects of RTX.

 

[Effi]

There is not much point in debating whether to take something if one don't know the gravity of possible side effects.

We are allowed to be worried about this though. We can't look into the future so we're just being cautious. Nothing wrong with that.

 

[deleder2k]

We are allowed to be worried about this though. We can't look into the future so we're just being cautious. Nothing wrong with that.

I totally agree. It is a valid claim. My point is that one can't compare side effects of a completely different drug and conclude based on that.

I have spoken to numerous doctors about CD20 depletion, and almost everyone say it is a pretty "soft" drug compared to other drugs used for other deliberating diseases. Since we don'r know what ME is, I think it is wise to be cautious, but if RTX works the way the researchers think I think the risk to benefit ratio is pretty clear. We would have to wait until phase 3 is published to be certain of the effect and side effects.

 

[JAH]

Hell yes!