veganmua
Senior Member
- Messages
- 145
- Location
- London, UK
I am in UK, but willing to travel if necessary.
Hi @veganmua
I am in uk also.
A few swiss clinics.will do it....will let you know.when i get final confirmation...prices etc.
Usa likely cheaper.
Did you hear back from OMI?
I am in UK, but willing to travel if necessary.
As the person who established that rituximab is useful in autoimmune disease I would actually advise against this. Rituximab is very unlike most drugs in that you have to understand how to use it in considerable detail in order to give it safely and effectively. Protocols exist but in RA use of protocols has led to a lot more adverse effects than necessary because many rheumatologists do not understand how the drug works. If you find a private clinic in Europe prepared to give it you should think long and hard about whether they actually know what they are doing. My suspicion is that any clinic prepared to give rituxmab privately in ME is very likely not to know what they are doing.
The fact that nobody is using it in the UK yet, even in a trial, is largely a reflection of the fact that physicians are not confident that they know enough about what they would be doing to justify subjecting patients to the potential risks.
Doesn't this raise the question of what's going to happen if the clinical trials prove that rtx is beneficial for PWME? If even rheumatologists don't always know how to use it for RA patients, how will we be able to get treated?
I just hope that somebody, somewhere is thinking ahead to 2018. If the Norwegian Phase III trial produces anything close to a 50% response rate and mostly major responders, the demand for treatment is going to go ballistic.
You can buy it on goldpharma at 2k a pop.
All you need now is mad scientist to slip it into your arm.
Would it be actually worse than a diet of alcohol, drugs and tobacco products that is abused.in general populations.
Wasnt serious about the mad scientist bit.You could have an allergic reaction and die. That is why you need to have the infusion done at a hospital.
Doesn't this raise the question of what's going to happen if the clinical trials prove that rtx is beneficial for PWME? If even rheumatologists don't always know how to use it for RA patients, how will we be able to get treated?
Hi.
I think most of us are in position to weigh up risk v benefits.
The thought of being unable to try it until 2021 is unbearable....as it appears to provide sigificant benefits.
Understandbly the medical profession has a duty to protect people but there is a time factor here. Every day is a day lost.