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

[Sallyagerharris]

It`s correct, I`m travelling there in November

Could you let me know the name of this clinic. Thank you. Sally

 

[FTY]

I've read through this thread with interest. I was extremely excited about rituximab but have recently decided that I should reign in my enthusiasm. That has been hard for me to do as I am as desperate as anyone (i.e. VERY!), but I think it is safer to hold back than to rush into something that is potentially very dangerous and for which there is really not much evidence. Although the trial results look good, the experiences of those outside of Norway don't seem to mirror that success. I attend a CFS clinic in London, 30-40 other CFS patients have apparently travelled to America to receive treatment, NONE have responded. You would expect some to have had some kind of response. Although it absolutely tears me apart to admit it to myself, this does not look good. Could it be that there is some kind of sub-set that only exists in Norway that does respond? Could it be the trial design? I don't know, but I think that with this illness it is sometimes better long term to be realistic and not to rush into things based on hope alone. Of course we want it to work, and so do all of the doctors and researchers and it is hard for all of us to hold back and be patient. Rituximab is a very toxic drug and it wouldn't be something I would want to put myself through until there is more evidence. I hope that the experience of those who decide to give it a go be of benefit in terms of accumulating experience and anecdotal evidence, I wouldn't presume to advise anyone to either do it or not to do it. However, as someone else here said, with this illness - things really can get worse. It is a fine balance to find between complete despair and desperate faith; I think somehow we have to have hope without grasping, we have to accept that there are no answers but value the experience we live. It breaks my heart daily but I think that it is better to face up to it and live with what we have in the moment as best as we can. Maybe we can have faith that something will come of this. I wonder if this illness involves more than just B cells but I hope that the rituximab research will give an insight into an aspect of the illness that in time will lead to a broader understanding. In the mean time I continue to be open to different approaches but try to be realistic and rational.

 

[Marky90]

I've read through this thread with interest. I was extremely excited about rituximab but have recently decided that I should reign in my enthusiasm. That has been hard for me to do as I am as desperate as anyone (i.e. VERY!), but I think it is safer to hold back than to rush into something that is potentially very dangerous and for which there is really not much evidence. Although the trial results look good, the experiences of those outside of Norway don't seem to mirror that success. I attend a CFS clinic in London, 30-40 other CFS patients have apparently travelled to America to receive treatment, NONE have responded. You would expect some to have had some kind of response. Although it absolutely tears me apart to admit it to myself, this does not look good. Could it be that there is some kind of sub-set that only exists in Norway that does respond? Could it be the trial design? I don't know, but I think that with this illness it is sometimes better long term to be realistic and not to rush into things based on hope alone. Of course we want it to work, and so do all of the doctors and researchers and it is hard for all of us to hold back and be patient. Rituximab is a very toxic drug and it wouldn't be something I would want to put myself through until there is more evidence. I hope that the experience of those who decide to give it a go be of benefit in terms of accumulating experience and anecdotal evidence, I wouldn't presume to advise anyone to either do it or not to do it. However, as someone else here said, with this illness - things really can get worse. It is a fine balance to find between complete despair and desperate faith; I think somehow we have to have hope without grasping, we have to accept that there are no answers but value the experience we live. It breaks my heart daily but I think that it is better to face up to it and live with what we have in the moment as best as we can. Maybe we can have faith that something will come of this. I wonder if this illness involves more than just B cells but I hope that the rituximab research will give an insight into an aspect of the illness that in time will lead to a broader understanding. In the mean time I continue to be open to different approaches but try to be realistic and rational.

What`s the name of the clinic in London? Cause I think I know what clinic it is, and I would not trust what they say due to obvious conflict of interest. It also sounds really unlikely that none have responded.. Imo.

Adverse effects are common with rtx, but very few die as a direct consequence of rtx-treatment alone.

Apparently the majority of the patients that started rtx-treatment at the private clinic in Norway earlier this year, have responded.

 

[FTY]

NHS clinic who I trust, - not optimum health (I can totally see that there would be a conflict of interest there!) Who were the patients who started at private clinic? I'm not an expert and I would love for someone to prove me wrong.

 

[FTY]

And yes - it also sounded unlikely to me that none have responded, but I do trust the doctor who told me this. And thinking about it, surely if people had travelled to America and got treatment and it had worked, we would know about it.

 

[Marky90]

NHS clinic who I trust, - not optimum health (I can totally see that there would be a conflict of interest there!) Who were the patients who started at private clinic? I'm not an expert and I would love for someone to prove me wrong.

Ok I thought it was optimum health

The patients were patients diagnosed with ME from a specialist.

Rtx won`t help everyone, but I can`t get my head around zero responders, if they all were patients fulfilling canada criteria e.g.. But of course it`s not impossible, we only have a phase 1 and phase 2 study from 1 country..

 

[BurnA]

I've read through this thread with interest. I was extremely excited about rituximab but have recently decided that I should reign in my enthusiasm. That has been hard for me to do as I am as desperate as anyone (i.e. VERY!), but I think it is safer to hold back than to rush into something that is potentially very dangerous and for which there is really not much evidence. Although the trial results look good, the experiences of those outside of Norway don't seem to mirror that success. I attend a CFS clinic in London, 30-40 other CFS patients have apparently travelled to America to receive treatment, NONE have responded. You would expect some to have had some kind of response. Although it absolutely tears me apart to admit it to myself, this does not look good. Could it be that there is some kind of sub-set that only exists in Norway that does respond? Could it be the trial design? I don't know, but I think that with this illness it is sometimes better long term to be realistic and not to rush into things based on hope alone. Of course we want it to work, and so do all of the doctors and researchers and it is hard for all of us to hold back and be patient. Rituximab is a very toxic drug and it wouldn't be something I would want to put myself through until there is more evidence. I hope that the experience of those who decide to give it a go be of benefit in terms of accumulating experience and anecdotal evidence, I wouldn't presume to advise anyone to either do it or not to do it. However, as someone else here said, with this illness - things really can get worse. It is a fine balance to find between complete despair and desperate faith; I think somehow we have to have hope without grasping, we have to accept that there are no answers but value the experience we live. It breaks my heart daily but I think that it is better to face up to it and live with what we have in the moment as best as we can. Maybe we can have faith that something will come of this. I wonder if this illness involves more than just B cells but I hope that the rituximab research will give an insight into an aspect of the illness that in time will lead to a broader understanding. In the mean time I continue to be open to different approaches but try to be realistic and rational.

I doubt that a special subset exists in Norway but obviously I can't be certain. You could turn this argument around and ask is there a subset in London who doesn't respond. Equally unlikely imo. Also very unlikely that the trial design has skewed reults. Some people on PR have responded to rtx in USA afaik. It certainly would be disheartening to think that nobody responded in USA but I think we would need confirmation of numbers before worrying too much. Some people are now getting rtx privately in Norway too so we should get a better picture if people travel there.

Everybody will probably have to weigh up the risks before deciding to go for rtx. Jonathan Edwards has said that this is hard to do and he knows more than anyone about rtx. So in the absence of a specific test it will remain a lottery. However if the odds are 50% for a response personally I think I would take the chance.

 

[ukxmrv]

And yes - it also sounded unlikely to me that none have responded, but I do trust the doctor who told me this. And thinking about it, surely if people had travelled to America and got treatment and it had worked, we would know about it.

We have had people post to this forum who have traveled to the USA for treatment and not responded. I don't distrust that.

However I have belong to a London group and have attended a London clinic, met some of the doctors from other clinics and many patients from various clinics. Spoken to leaders of London groups.

30-40 patients from London attending a specific clinic and not responding seems like a large number. Also it takes time to see if there is a response. It is not something patients will know about straight away.

I think whomever told you this is exaggerating the numbers or is mistaken.

If there were 30-40 patients really travelling from one clinic who had not responded we would know about in locally - wouldn't we?

 

[FTY]

Thanks @BurnA I agree about the regional subset theory - that just doesn't seem plausible to me, but who knows? It's very strange though that anecdotal results are no where near as encouraging as the phase 2 trial results. I guess we have to be open minded and wait and see. I think I was putting too much hope into it so that when I was told by Dr not to expect too much I was monumentally disappointed (to say the least). It will be interesting to hear results of people travelling to Norway to get it privately. I would give it a go at 50% response chance but I'm so wary of being disappointed as I've been there SOO many times.

 

[FTY]

We have had people post to this forum who have traveled to the USA for treatment and not responded. I don't distrust that.

However I have belong to a London group and have attended a London clinic, met some of the doctors from other clinics and many patients from various clinics. Spoken to leaders of London groups.

30-40 patients from London attending a specific clinic and not responding seems like a large number. Also it takes time to see if there is a response. It is not something patients will know about straight away.

I think whomever told you this is exaggerating the numbers or is mistaken.

If there were 30-40 patients really travelling from one clinic who had not responded we would know about in locally - wouldn't we?

I think the number was patients who Dr knew of who had travelled to States, not people who had gone in any way on his recommendation. I guess he's shared experiences with other Drs and his main point was that, although this is entirely anecdotal info and in no way conclusive, he would have thought that at least someone in his circle would have had a patient who had in some way responded, even just a bit. He had previously been very keen on Rituximab and has I think been a bit discouraged recently. But time will tell. None of us know right now. I think I will maintain a vague hope!

 

[Marky90]

I think the number was patients who Dr knew of who had travelled to States, not people who had gone in any way on his recommendation. I guess he's shared experiences with other Drs and his main point was that, although this is entirely anecdotal info and in no way conclusive, he would have thought that at least someone in his circle would have had a patient who had in some way responded, even just a bit. He had previously been very keen on Rituximab and has I think been a bit discouraged recently. But time will tell. None of us know right now. I think I will maintain a vague hope!

Well anecdotal stuff like this is why studies are awesome)..

 

[Marky90]

Thanks @BurnA I agree about the regional subset theory - that just doesn't seem plausible to me, but who knows? It's very strange though that anecdotal results are no where near as encouraging as the phase 2 trial results. I guess we have to be open minded and wait and see. I think I was putting too much hope into it so that when I was told by Dr not to expect too much I was monumentally disappointed (to say the least). It will be interesting to hear results of people travelling to Norway to get it privately. I would give it a go at 50% response chance but I'm so wary of being disappointed as I've been there SOO many times.

I think 50 % ish, could be probable.. And if so, it`s incredible.

 

[FTY]

Well anecdotal stuff like this is why studies are awesome)..

Totally agree, that is why I will wait before trying to get it privately now. And yes, 50% would be awesome!

 

[BurnA]

Thanks @BurnA I agree about the regional subset theory - that just doesn't seem plausible to me, but who knows? It's very strange though that anecdotal results are no where near as encouraging as the phase 2 trial results. I guess we have to be open minded and wait and see. I think I was putting too much hope into it so that when I was told by Dr not to expect too much I was monumentally disappointed (to say the least). It will be interesting to hear results of people travelling to Norway to get it privately. I would give it a go at 50% response chance but I'm so wary of being disappointed as I've been there SOO many times.

I think we are all wary of being disappointed. However this is not a reason not to try it. For me rtx offers hope and it's that hope that keeps me going on the dark days. I am very wary of trying it and not responding because then that hope is gone. But I know I will try it as soon as I can, I am scared not of the side effects but of not responding and then losing the hope.

 

[Marky90]

I think we are all wary of being disappointed. However this is not a reason not to try it. For me rtx offers hope and it's that hope that keeps me going on the dark days. I am very wary of trying it and not responding because then that hope is gone. But I know I will try it as soon as I can, I am scared not of the side effects but of not responding and then losing the hope.

Well put BurnA, exactly the same here.
If Rtx doesn`t work, then hopefully the cyclo-trials are soon complete and positive.
Also, the possibility for IVIG opens up when the immunoglobulin levels fall low with rtx.
If nothing comes of this, then at least surely some answers will come after the phase three trials. Or through all the other research.

We`ll be back.

 

[BurnA]

Well put BurnA, exactly the same here.
If Rtx doesn`t work, then hopefully the cyclo-trials are soon complete and positive.
Also, the possibility for IVIG opens up when the immunoglobulin levels fall low with rtx.
If nothing comes of this, then at least surely some answers will come after the phase three trials. Or through all the other research.

We`ll be back.

Yes the cyclo trials are our second chance so to speak but we dont know yet if it's a real chance or not. I hope so!

 

[FTY]

I think we are all wary of being disappointed. However this is not a reason not to try it. For me rtx offers hope and it's that hope that keeps me going on the dark days. I am very wary of trying it and not responding because then that hope is gone. But I know I will try it as soon as I can, I am scared not of the side effects but of not responding and then losing the hope.

Exactly! That is precisely how I feel.

 

[FTY]

Yes the cyclo trials are our second chance so to speak but we dont know yet if it's a real chance or not. I hope so!

Sorry - what are cyclo trials?

 

[BurnA]

Sorry - what are cyclo trials?

There is an open label phase 2 trial with cyclophosphamide currently in progress. There are threads which discuss it, you should look there. Similar story to rtx, patients were observed to respond during cancer treatment.
Its a lot more potent than rtx though.

 

[FTY]

There is an open label phase 2 trial with cyclophosphamide currently in progress. There are threads which discuss it, you should look there. Similar story to rtx, patients were observed to respond during cancer treatment.
Its a lot more potent than rtx though.

Thanks.