Would you take Rituximab

[Andrew]

Given the uneven success rate, the relapse rate, and the risk of taking drugs, would you take rituximab if an oncologist was willing to treat and you could afford it? Also, please discuss your answer.

 

[Persimmon]

It's tempting, but I'm undecided.

I recently made contact with a senior immunology researcher, who has used Rituximab in clinical trials for other conditions. He urged caution, and suggested waiting - he cited the potential dangers, and stressed the lack of independent verification and lack of evidence as to why it would work...

On the other hand, it looks so promising, and the first independent replication study will probably take 3 years (from now to publication date).

If we suppose that the Norwegian results are independently replicated, I suspect that focus would turn quickly to alternative monoclonal antibody class drugs - and that better-targeted and less dangerous ones that Rituximab might promptly be favoured... This prospect also weighs on the side of deferring personal experimentation.
(I presume that Rituximab was chosen by the Norwegians, not because it was any more likely than various other mAb drugs to work, but because it is a standard mAb - one with relatively wide application and one that had been so well tested.)

Andrew, what are your personal thoughts?

 

[Nielk]

I said no because I would have to see a lot more as far as studies and positive results before I would take such a strong drug.

 

[Mya Symons]

I would try it because I have had several blood tests in the past where I have had elevated white blood cells. When they have done further testing to see which blood cells where elevated it was always high B-Cells and low T-Cells. But, there would be a condition--Before I take the Rituximab I would need to get antivirals for all the herpes viruses. This is because without Valcyclovir I have bad muscle twitching, so I know they are a problem for me that probably would get worse with a suppressed immune system.

 

[SOC]

I haven't answered yet because I'm still actively pondering the question. When I've done a bit more research, I'll add my vote.

I do want to bring up a question at this point, though -- Does degree of disability factor into people's answer to this question?

As with other potentially dangerous medications, the risk needs to be balanced with the benefit. I'm thinking that in my early days of ME/CFS, when I still had a decent quality of life, I would not have felt it worth the risk. At another time, when I was largely bedbound (with little cognitive ability, either) and not much use to myself and a burden to my family, I would have considered it well worth the risk to have something resembling a real life.

Do other responders to this poll think the same way?

 

[Nielk]

I haven't answered yet because I'm still actively pondering the question. When I've done a bit more research, I'll add my vote.

I do want to bring up a question at this point, though -- Does degree of disability factor into people's answer to this question?

As with other potentially dangerous medications, the risk needs to be balanced with the benefit. I'm thinking that in my early days of ME/CFS, when I still had a decent quality of life, I would not have felt it worth the risk. At another time, when I was largely bedbound (with little cognitive ability, either) and not much use to myself and a burden to my family, I would have considered it well worth the risk to have something resembling a real life.

Do other responders to this poll think the same way?

SOC,

I did consider this when I voted no. Even though my situation is severe and the quality of my life is tremendously affected, this to me is even more reason not to take a chance to aggravate my condition. I would not be able to bear that. That's the reason I have not tried GcMAF or Ampligen. I am afraid because of some people's experiences of adverse effects that do not go away. I so much want to get better, but can't bear to get worse than I am now.

 

[CBS]

Does degree of disability factor into people's answer to this question?

As with other potentially dangerous medications, the risk needs to be balanced with the benefit. I'm thinking that in my early days of ME/CFS, when I still had a decent quality of life, I would not have felt it worth the risk. At another time, when I was largely bedbound (with little cognitive ability, either) and not much use to myself and a burden to my family, I would have considered it well worth the risk to have something resembling a real life.

Do other responders to this poll think the same way?

I see this question in the same way. After nearly 18 years, having battled through some very severe periods of disability and feeling the toll this disease has taken on my body, I would very likely give it a try - as part of a study under the close supervision of by a doc well versed with the potential side effects. I may not have been as open to the risks 10 years ago. I likely would have let some old guy - who's had this for two decades and who had a lot less to lose than I did - give it a shot first. Then again, if I had tried it ten years ago, would I be in the hole that I'm in today?

 

[Sallysblooms]

I have improved with supplements. Prescription drugs would be a last resort, always are. Especially a dangerous one.

 

[SOC]

SOC,

I did consider this when I voted no. Even though my situation is severe and the quality of my life is tremendously affected, this to me is even more reason not to take a chance to aggravate my condition. I would not be able to bear that. That's the reason I have not tried GcMAF or Ampligen. I am afraid because of some people's experiences of adverse effects that do not go away. I so much want to get better, but can't bear to get worse than I am now.

Good point, Nielk. That's another way to think about it -- is one willing to take the risk of getting worse?

 

[Sean]

Option D: Given the current state of science, I would only take Rituximab as part of a proper clinical trial.


Also, I suspect it is not a practical therapeutic answer for us, but it is a very serious clue toward one.

 

[SOC]

CBS and Sean have helped me clarify my thinking on this question.

I vote yes with the caveat that it was part of a responsible clinical trial with doctors who understand the medication and it's potential side effects.

There's also something for me in the "let the old guy (gal) take the risk" idea because I am the mother of an ME/CFS patient (in full remission, at present :victory. I would rather take the risk myself, at this stage in my life, so that if my daughter (or, heaven forbid, her children) needs aggressive treatment for ME/CFS, there will be less risk for them at earlier stages of life.

With regard to my own question: I'm largely housebound, but I do have some quality of life compared to a couple of years ago. I would love to have a better quality of life -- to get out and do things, to do more housework (never thought I'd be saying that ), and not to have relapses or PEM. So, it would be worth the risk to me to try Rituximab as long as it was administered by a knowledgeable and responsible doctor.

 

[fla]

I said "undecided" because I'd like to see more studies. How those upcoming studies go and how my ME is progressing at that time would help me decide one way or the other.

 

[dsdmom]

I'm genuinely curious why some people are responding that they would only do it if part of a clinical trial. Why is that? What purpose does that serve?

I said yes...of course with a doctor with a lot of experience w/ the drug following the protocol of the norwegian researchers (aka their new protocol).

 

[Andrew]

I put "no" because during my last visit to an oncologist, I was pondering what I would say if he offered. I realized I was not ready to pull the trigger. My main reason might be based on not understanding the results, though. My impression is that most of the people who improved also relapsed. So I would want to wait until they figure out treatment better. Thing is, if it begins to look like figuring this out will take 20 more years, then I have to reconsider.

 

[L'engle]

I voted no because I'm trying to stick with natural supplements at the moment. And of those, I'm only taking ones that have been studied extensively and determined not to have long term side effects (I don't think 'natural=harmless', btw). To me the idea of having temporary gain with a fear of later relapse and perhaps worsening would be a large deterrent. I can see the other views on this though.

 

[Waverunner]

I said yes but only in the presence of some diagnostic markers.

 

[Overstressed]

I voted 'no', firstly because it's no cure, and secondly, I rather use drugs that treat the cause, not the result of the cause and thirdly, I believe in drugs that stimulate your own immune system. This is not the case, it depletes your B-cells, which is dangerous to me.

On the other hand, if this was the only option, AND I had nothing to lose anymore, I would take it... But there is Gc-Maf, MAF314, MAF878 and ...

OS.

 

[Jemal]

Undecided. I would be tempted if I was offered it as a treatment, but I think I would like to see some more research done first.
Currently my ME/CFS is not severe, I am still able to work about 30 hours a week for example. I think if my condition was much worse, I would probably have voted "Yes".

Rituximab presents some dangers, but that's not really what is scaring me. It's the fact that it knocks out part of your immune system... and our immune system might already be under siege.

 

[DaiWelsh]

I have voted no currently as I am currently just barely able to earn a living and support my family and I cannot afford a major disruption in my health that may jeopardise that. However it is becoming increasingly hard to maintain this equilibrium due to the regular travails of life and if I got just a little worse and lost my job then I think my answer would almost certainly change to yes.

Without my job my family would be in severe financial difficulty in very short order and I believe the risks would be justified. If the risk/reward profile changes significantly as more research is done then I may consider taking it anyway as full health would open up a wealth of employment opportunities but while I am restricted to very few jobs I can effectively do and while I hold on to one of them, the current chance of recovery is not sufficient to justify it.

 

[alex3619]

As part of a properly monitored clinical trial, yes. So I am with those who said yes as part of a trial, and also with Waverunner - a proper trial has to be looking at markers. Otherwise my answer would be no, its too soon, way too soon. Bye, Alex