• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
Out of the 12 people I found on these forums who were treated with rituximab, only one person so far has responded (@Rebecca2z, but she certainly responded very well — see this thread).
You might want to adjust your assessment...

Excerpt from: Rituxan does wear off :(
Just wanted to give an update. About 6 and 1/2 months after the fourth round of Rituxan I contacted my doctor and told him I was seeing some signs that the RTX was wearing off. He said I had to do some B-Cell tests in order to know if I am due for a maintenance dose, so I drove the 8-9 hour round trip just to do the test. He contacted me and said no it was too soon.

Now jump ahead 2 months and I write him again and tell him I am really going down hill. He requests I come in again and have the B-Cell test which I do. He calls me and says yes it is time, I will need two rounds instead of one.
 

Hip

Senior Member
Messages
17,910
You might want to adjust your assessment...

As far as I am aware, nobody is suggesting that rituximab is a one-off cure for ME/CFS. I believe it will have to be a lifetime treatment, as after rituximab depletes the B cells that are driving autoimmunity, I understand that these cells will slowly reestablish themselves after some time. So it needs another rituximab dose to deplete them again.

Perhaps @Jonathan Edwards can confirm this.


It's interesting that in this post Prof Edwards mentions that for many patients, taking a tenth of the normal dose of rituximab may be just as effective as the full dose, in terms of creating complete B cell depletion.

This offers potential to save quite a bit of money in the long term, if you only use a 10th of the rituximab dose. I wonder if there might be lower risks of side effects with lower doses as well.

You probably wouldn't do this on your first doses, the doses where you test to see if rituximab is efficacious for you; but having established efficacy, there may be the scope for lower doses.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
As far as I am aware, nobody is suggesting that rituximab is a one-off cure for ME/CFS. I believe it will have to be a lifetime treatment, as after rituximab depletes the B cells that are driving autoimmunity, I understand that these cells will slowly reestablish themselves after some time. So it needs another rituximab dose to deplete them again.

Perhaps @Jonathan Edwards can confirm this.


It's interesting that in this post Prof Edwards mentions that for many patients, taking a tenth of the normal dose of rituximab may be just as effective as the full dose, in terms of creating complete B cell depletion.

This offers potential to save quite a bit of money in the long term, if you only use a 10th of the rituximab dose. I wonder if there might be lower risks of side effects with lower doses as well.

You probably wouldn't do this on your first doses, the doses where you test to see if rituximab is efficacious for you; but having established efficacy, there may be the scope for lower doses.

Yes, regular repeats of rituximab are the norm, although in some cases it may be as far apart as three to four years. Judging precisely when to repeat treatment is the most important part of the protocol and one which I suspect many physicians may not understand unless they are involved in the background science.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Yes, regular repeats of rituximab are the norm, although in some cases it may be as far apart as three to four years. Judging precisely when to repeat treatment is the most important part of the protocol and one which I suspect many physicians may not understand unless they are involved in the background science.

What determines the schedule for individual patients in RA?
 

veganmua

Senior Member
Messages
145
Location
London, UK
@Jonathan Edwards When do you think a UK rituximab study is likely to happen? I am currently a patient of Dr Berkovitz in London. I'm desperate to get on a trial! @Marky90 How much is your rituximab treatment in Norway? Good luck with it! Do you think it would be possible for a non-Norwegian speaker to go and get treatment?
 

Jonathan Edwards

"Gibberish"
Messages
5,256
@Jonathan Edwards When do you think a UK rituximab study is likely to happen? I am currently a patient of Dr Berkovitz in London. I'm desperate to get on a trial! @Marky90 How much is your rituximab treatment in Norway? Good luck with it! Do you think it would be possible for a non-Norwegian speaker to go and get treatment?

I am afraid I cannot give any information about when a trial might occur in the UK. As you know I am retired and can only advise. There needs to be a clinical team in place with the time and resources to take care of the patients and that is not easy to organise in the present system.
 

BurnA

Senior Member
Messages
2,087
There needs to be a clinical team in place with the time and resources to take care of the patients and that is not easy to organise in the present system.
It's disappointing to hear that organisational issues are a problem when so much is at stake for patients. Generally where there is a will there is a way, so I hope a way is found without too much delay.
 

deleder2k

Senior Member
Messages
1,129
@veganmua, they are accepting foreign nationals. I think the two first doses of 1+1 gram is 5700 quid. 4 maintenance doses at month 3, 6, 9, and 12 is 6400 Sterling. If you want to book an appointment you can do it at +47 52 69 69 69
 

veganmua

Senior Member
Messages
145
Location
London, UK
@Jonathan Edwards Is there absolutely anything I can do to help a UK trial happen? I feel so helpless.

@deleder2k Thanks for the info. I don't know how I would begin to get that kind of money, though.

It sucks to realise that my best chance at ever getting relief from this illness is suicide.
 

Aurator

Senior Member
Messages
625
It's disappointing to hear that organisational issues are a problem when so much is at stake for patients. Generally where there is a will there is a way, so I hope a way is found without too much delay.
We need the will in the "right" people; that's the problem. The right people could organize it tomorrow if they had the will. They don't have the will because on the basis of the evidence they have at present (or rather the evidence they're prepared to consider) they can't justify the expense, either to themselves or to others as the case may be.

This is our stumbling block, and it's unlikely to budge, I'd say, unless or until the evidence points overwhelmingly to the conclusion that investment in a publicly funded UK Rituximab trial is amply justified. Unfortunately it won't be for us to decide what constitutes overwhelming evidence. Only the "right" people can decide that ultimately.
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
It sucks to realise that my best chance at ever getting relief from this illness is suicide

Getting lymphoma is another potential route to Rituximab - and perhaps relief from ME.

What does it say about this illness, when hoping for cancer is one of our best options to access treatment.
 

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
Getting lymphoma is another potential route to Rituximab - and perhaps relief from ME.

What does it say about this illness, when hoping for cancer is one of our best options to access treatment.

You really dont want lymphoma.. but i get your point
 

veganmua

Senior Member
Messages
145
Location
London, UK
@Aurator @Jonathan Edwards Doesn't Invest in ME have £479,000 raised towards a rituximab trial? Does that not come close to covering the expense? Would more fundraising help?

I'm thinking it will be easier to raise the £5568 to go to Dignitas than £12100 for rituximab in Norway. If I am even physically able to get to Switzerland or Norway, anyway!
 

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
@Aurator @Jonathan Edwards Doesn't Invest in ME have £479,000 raised towards a rituximab trial? Does that not come close to covering the expense? Would more fundraising help?

I'm thinking it will be easier to raise the £5568 to go to Dignitas than £12100 for rituximab in Norway. If I am even physically able to get to Switzerland or Norway, anyway!

I strongly advice you to see a shrink if you`re sucidal.. Theres no reason to kill yourselves on the verge of breakthrough. Life awaits if you hold on. Life is awesome when healthy.
 

Kati

Patient in training
Messages
5,497
I think there is a lot of hope to be had. Invest in ME in the UK does great work, has fundraised for the Rituxan trial, and more and more researchers are entering the field. The work of the Australians, Dr Lipkin and OMI, just to name a few is very promising, not counting the Norwegians.

Moreover, there is good research that is just waiting to be published. PACE trial is on the verge to be retracted. We are getting closer and closer.

Now is not the time to give up!
 
Last edited:

Navid

Senior Member
Messages
564
That`s not true, good research coming now. Both on biomarkers and treatment.


Is this true? Are there really some treatments besides rituxin coming. If so, when???????? It's hard to keep holding on to hope when the day to day reality of life is so painful.
 

Justin30

Senior Member
Messages
1,065
There is much going on in the ME world as of late. I will list a few and there maybe some overlap from other peoples posts. This helps me see hope as well even when things seem very grim. Here is a list of whats going on that i know of or that I have heard of:

- PACE Trial under major scrutiny
- OMF Study on the severely ill
- NIH Study
- Norway and Rutuximab and Cychlo
- Firing of Hemispherix CEO and hopes for Ampligens approval
- Levine, Peterson, Lipkin are working together on something as per Levines recent talk
- Lipkin study
- Jarred Younger and Neuro Inflamation ( he is having to turn away students cause of so much interest)
- Stuff out of Harvard and Small Fiber Neuropathy and FM and possible link to ME/CFS (Dr Oaklander)
- Some interesting work that talks about Anti adrenergic receptors and ME, Rutuximab and POTS
- First official protest by MEAction in Washington DC (If you can help out please do)
-Work out of Simmaron Research and Dan Peterson
- grumblings out of the UK and Canada about Rutuximab trials they are waiting on Norways results as per what I can see from Canadas perspective.
- Dr Navaiux and OMF finding clues in the Mitochondria already, part of OMF
- Dr. David Bell joining OMF
- potential Biomarker out of Australia

I just one to point one thing out we know Rutuximab is one heck of a serious drug. Its used for Lymphoma, other cancers, autoimmune disease, etc. If approved for ME we overnight become part of the most serious disease on the Planet....they can't deny it anymore. Further once this happens and it is approved it would be smart of our organizations to throw in everything else about biomarkers, NIH Study, OMF, Virus Hunter, OMI findings.....you get the picture.

We are close, I think once PACE is demolished the flood gates will open Media will run with this. We will get more funding from NIH and heqlth authorities. Not to mention once PACE is done with...biomarkers are found...then big pharma will be all over us ME/CFS'ers like a fat kid on a smarty.....there are millions of us worldwide....

Hold on history is going to be made and we will recieve help.
 
Last edited: