Is there any way I can be treated with rituximab privately?

[Marky90]

Am I the only one who is surprised we don't have more people posting on PR about their RTX experience ? If OMI are seeing similar results to Norway and if people are travelling from around the world to go there I would have expected more people to post about their experience ? I am not saying I don't believe they are seeing results I am just surprised more people aren't talking about it - good or bad. Maybe PR is not as popular as I like to think !

People use Facebook forums. In Norway the main one has 3000 members. 4-500 active everyday.

 

[deleder2k]

I think only 1 patient got ME from Giardia in the study published in 2011. Many patients got ME prior to the outbreak. It doesnt seem likely that the majority of these have an active Giardia infection which RTX targets.

 

[BurnA]

People use Facebook forums. In Norway the main one has 3000 members. 4-500 active everyday.

Thanks. I wonder are there forums for US patients also ? Anybody know, I am sure if there are this would be the place to hear more patient stories relating to RTX although I would be surprised they haven't leaked on PR by now if they exist.

 

[Riley]

I attend a CFS clinic in London, 30-40 other CFS patients have apparently travelled to America to receive treatment

This strikes me as rather unlikely. There is only one place in America treating CFS with Rituximab (OMI). I may be wrong, but I don't think they are giving it to that many patients. I would guess the number is well under 100. Probably even under 50. Again, if I am incorrect someone please let me know.

Also the cost not counting travel or anything else is in the ballpark of 50,000 dollars.

Therefore, I find it hard to believe that 40 people went to OMI from England to be treated with Rituximab.

 

[BurnA]

This strikes me as rather unlikely. There is only one place in America treating CFS with Rituximab (OMI). I may be wrong, but I don't think they are giving it to that many patients. I would guess the number is well under 100. Probably even under 50. Again, if I am incorrect someone please let me know.

Also the cost not counting travel or anything else is in the ballpark of 50,000 dollars.

Therefore, I find it hard to believe that 40 people went to OMI from England to be treated with Rituximab.

Hi Riley,
If you don't know, why would you think they have given it to under 100 patients ? have you a reason to think this ?
My opinion is if they are claiming a similar response rate to published data then why wouldn't they be treating more than 100 patients ? I.e if they know potentially 60% may respond then surely they would be giving it to plenty of patients ?

 

[Riley]

If you don't know, why would you think they have given it to under 100 patients ?

100 patients is A LOT of patients. There are what, 8 infusions on the current dosing schedule? That would mean three patients getting a Rituximab infusion every single day Monday through Friday if they did 100 patients in a year.

I guess if they started in 2011 it's more possible they've done higher numbers of patients.

It's also my impression that they're not just giving it to everyone that walks through the door.

It just strikes me as improbable that

1. OMI doctors are recommending Rituximab treatment to so many patients.

2. So many patients are willing to take the risk and have the money to pay for it.

Just me speculating though.

 

[BurnA]

100 patients is A LOT of patients. There are what, 8 infusions on the current dosing schedule? That would mean three patients getting a Rituximab infusion every single day Monday through Friday if they did 100 patients in a year.

I guess if they started in 2011 it's more possible they've done higher numbers of patients.

It's also my impression that they're not just giving it to everyone that walks through the door.

It just strikes me as improbable that

1. OMI doctors are recommending Rituximab treatment to so many patients.

2. So many patients are willing to take the risk and have the money to pay for it.

Just me speculating though.

Really this is not that constructive a discussion as it based on speculation. But I don't think 100 is in any way a large no.


I should hope they aren't giving it to anyone who walks through the door !

 

[Riley]

One more thought...

My opinion is if they are claiming a similar response rate to published data then why wouldn't they be treating more than 100 patients ? I.e if they know potentially 60% may respond then surely they would be giving it to plenty of patients ?

The Norwegian Phase II trial consisted of only thirty patients. I believe 18 out of 30 were responders, and that is where the 60% figure comes from.

If OMI has treated 100 patients, they would have over three times the sample data of the Norwegians! Not impossible, but it seems unlikely.

Does anyone know if OMI is documenting their results in any way or planning on sharing them?

 

[Marky90]

If somebody contacts them, I am sure they will tell how many they have treated.

 

[bthompsonjr1993]

If somebody contacts them, I am sure they will tell how many they have treated.

And if anyone wants to do so, here is their email address: clinic@openmedicineinstitute.org

 

[bthompsonjr1993]

Also, I just found these two youtube videos featuring Fluge and Mella and some patients who they have successfully treated with rituximab. Problem is, the videos are in Norwegian! I know there are some people on here who speak fluent Norwegian. The videos are kind of long so I would never expect a full transcript, but maybe some of you want to watch these and give us an idea of some of the most important takeaways/things said!
Video 1:

Video 2:

 

[bthompsonjr1993]

Also, I know that there has been speculation on this board about how many people have been treated with Rituximab at the OMI in California. Not sure how much this helps answer that question, but I was recently watching a video that was made in mid 2013, and it said that Koegelnik had treated about 40 patients.

 

[deleder2k]

Guess you saw that one. That one has English subs.

Have you seen this one? From May 2014.

The videos you linked to are somewhat old. I think they are from 2011 when the double-blinded study was published. They talk about their (now outdated) results, while a girl who went into remission told us how rtx changed her life. She went from housebound to 100%. She tells that she now can work out and go cross country skiing all the time.

 

[bthompsonjr1993]

Guess you saw that one. That one has English subs.

Have you seen this one? From May 2014.

The videos you linked to are somewhat old. I think they are from 2011 when the double-blinded study was published. They talk about their (now outdated) results, while a girl who went into remission told us how rtx changed her life. She went from housebound to 100%. She tells that she now can work out and go cross country skiing all the time.

Thanks! I figured it was something like that. Yeah, I have seen those, great videos. The one entitled "Update on results on ME patients in new Rituximab study." Is actually the one I referenced in my earlier post about the video that said that as of mid 2013 the OMI had treated 40 people with rituximab.

 

[halcyon]

100 patients is A LOT of patients.

For whatever it's worth, I've heard third hand that the number is at or north of 100 patients that they have tried it on. This is not surprising at all. OMI has patients coming to them from all over the world. If you look at polls done here over the years there is no shortage of patients willing to try it. The only thing holding people back is access to the drug and the cost.

 

[Sasha]

@Jonathan Edwards - sorry if this has been asked before but I think that someone made a post-hoc observation that rtx seemed less effective in older PWME in the Norwegian trial.

In RA, is rtx less effective in older patients?

 

[deleder2k]

These are all the responders from the trial published in July 2015. The ones that had no response at all were aged: 42, 21, 50, 26, 37, 32, 51, 49, 56, 35. I haven't plotted this into SPSS, but it looks like we don't have the data to conclude that age matters.
Direct link: http://bildr.no/image/eW13QU10.jpeg

 

[Jonathan Edwards]

@Jonathan Edwards - sorry if this has been asked before but I think that someone made a post-hoc observation that rtx seemed less effective in older PWME in the Norwegian trial.

In RA, is rtx less effective in older patients?

I know of no analysis but some older patients have responded very well.

 

[Sasha]

I know of no analysis but some older patients have responded very well.

Has there been no analysis because anecdotally there seems to be no such trend?

 

[Jonathan Edwards]

Has there been no analysis because anecdotally there seems to be no such trend?

It may not have occurred to anyone to analyse. We had evidence from the outset that response rates in young and old were substantial so there would seem little to learn from the precise figure. It might possibly tell us something about the immunology but I would expect that to be more to do with length of disease. The first patient was around 70 and had had disease for about 20 years and did very well.