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Has anyone bought this drug from a "cheap source"???? If so would you mind sharing the how/where and the cost. Thanks.
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Thanks, I hadn't known about Indian RTX. Any relevant dissimilarity would likely be in it's Fab region - and therefore the epitope on CD20 that it binds to. IIRC, that also applies to the Humax fully-human anti-CD20 mab, and any other mab like the linear one under development somewhere.RTX is something which is given under supervision, often with monitors to your heart rate and more, and it's normal that you have to sleep over at the hospital just for precautions. It's very rare that something goes a rye, but if it does, one should be at a hospital.
RTX is available in India, and I guess one should have no problem convincing a doctor to dispense it. Although if I was to get it off label again, I'd probably go to Spain and get it off label there.
They have something called Reditux in India, although I have doubts that it's similar to RTX http://www.drreddys.com/products/popups/reditux.htm also written about it here: http://en.wikipedia.org/wiki/Reditux
Thanks, I hadn't known about Indian RTX. Any relevant dissimilarity would likely be in it's Fab region - and therefore the epitope on CD20 that it binds to. IIRC, that also applies to the Humax fully-human anti-CD20 mab, and any other mab like the linear one under development somewhere.
It's said that MABs are very hard to produce, unlike ordinary pharmaceuticals. Yet OTOH you can buy MABs that are made for almost anything these days for laboratory testing, such as immuno-labeling. I'm thinking that the huge expense is really in the trials to prove them safe and effective for treatment in humans - so maybe they really can produce a safe and effective type of RTX in India. I wonder if they have government supervised post marketing adverse event reporting system there?
Why would you choose Spain?
Btw, I'd expect that getting a bad infusion reaction (aside from cases where the patient is not allergic to mice) would be more likely in cancer patients, simply because there are more B cells to kill and spill their contents. E.g. there is such a thing as tumor lysis syndrome, that wouldn't apply to CFS. But then again, longer term reactions in the immune-dysfunctioned don't apply to cancer patients as they might in CF - even in cancer Pts with secondary auto-immunity.
I did see a Canadian discount pharmacy selling the Reditux - I suspect that comes with free shipping
Hospital monitoring, or equivalent trained medical monitoring, is mandatory for this drug. An occasional patient has extreme reactions - in a hospital its easy to deal with, if you are far from quality care it could be life threatening.
I am hoping they can massively increase the rate of full recovery with this drug (no continuing treatment required). If so it will be easy to sell the idea to governments (and maybe insurance companies) that it should be subsidized. If not this will be a hard drug to convince anyone to subsidize.
Bye, Alex
Thanks for all the welcome info, and for the cites - I will wend my way through them. To me, the RTX experiences are interesting because of the clues they provide. I'm thinking that CFS is like a Rube Goldberg machine - in some people, knocking out the B Cells brings it to a halt but that doesn't mean that's the only or best measure to take.What made me feel that RTX would be relatively safe compared with other treatments, is that it's used widely on people with RA, and many of which do also have ME. So since it was safe for them, it was safe enough (as a long shot) for me.
From my vantage point of seeing RTX used with lymphoma Pts (not me personally), the only ones who got RTX in-hospital were the ones who were already in there for other reasons.Hospital monitoring, or equivalent trained medical monitoring, is mandatory for this drug. An occasional patient has extreme reactions - in a hospital its easy to deal with, if you are far from quality care it could be life threatening.
Thanks for all the welcome info, and for the cites - I will wend my way through them. To me, the RTX experiences are interesting because of the clues they provide. I'm thinking that CFS is like a Rube Goldberg machine - in some people, knocking out the B Cells brings it to a halt but that doesn't mean that's the only or best measure to take.
Btw, your downhill slide didn't result from the RTX, right?
Looking at your cite, "Safety Study of GNbAC1 in Multiple Sclerosis Patients", it seems as if that MAB binds right to a virus protein. Correct? Since ABs don't get through the BB Barrier, I'd wonder about that approach in M.E. - if there's indeed a virus in the brain or basal root ganglia or wherever. I know there are some rare MABs that get into the brain, but they are engineered to be endocytosed and then shuttled across the blood vessel cell, then exocytosed. Like so:http://www.nature.com/news/2011/110525/full/news.2011.319.html Very clever stuff.
Now that is very interesting, Redo - etanercept is generating reports of fast responses in a wide variety of conditions, which is always interesting if you can reasonably believe that the fast effect is not just from the power of suggestion.My impression is that RTX treatment responses might be like with RA; some get better, others not, but if one thing doesn't help, other immune modulating/suppressing agents might work... I guess that's much of the reason Mella/Fluge are trying the other RA drug Enbrel on PWME right now.
http://www.drreddys.com/products/popups/reditux.htmReditux™ is approximately priced at half the originator’s price.
Dr Reddy’s also launched its social initiative called “Sparsh” - an Assistance Program for cancer patients undergoing treatment - at the Reditux™ launch. Patients identified by the doctors through Sparsh would be provided Reditux™ free of cost.
Now that is very interesting, Redo - etanercept is generating reports of fast responses in a wide variety of conditions, which is always interesting if you can reasonably believe that the fast effect is not just from the power of suggestion.
Thinking out loud:
One example of many video testimonials, this one in the setting of post stroke:
"Rapid improvement in chronic stroke deficits following perispinal etanercept"
www.youtube.com/watch?v=5uDOudjOshY @1:45
"...within ten minutes following the treatment..."
There's a Dr. Tobinick who seems to be the pioneer in using etanercept off label in novel applications. I suppose all of the testimonials are Pts of his practice - has also seems to have patented a spinal injection procedure.
A published Tobinick case study:
"Rapid cognitive improvement in Alzheimer's disease following perispinal etanercept administration"
http://www.jneuroinflammation.com/content/5/1/2
(seems like a high impact factor article, FFT)
Yet here is a complaint that Amgen does not support research in novel uses, only independent researchers are doing so:
"Keynote: Repurposing of Enbrel® for Alzheimer"
www.youtube.com/watch?v=VvL9j9GRfds @3:36
It looks as if TNF blockers just maybe can have the potential to knock RTX out of the box for use in management of CFS one day. I see that etanercept is also being used for sciatica pain, so maybe it'd even work for M.E. pain, in some undefined population subset.
An India made version: http://www.tajdrug.com/Etanercept.htm
It's home injected subQ in many uses, btw. [edit: I wonder if some daring and/or desperate soul has ordered up a few prefilled syringes and took a shot at it.]
That's enough typing for now. I think I'm going to get some beakers and a hamster and mix some up. If I don't post again, then that probably means it didn't go so well
I didn't know that, thanks. I don't know much about ME muscle pain because I've never really had any. I have had:So Sherlock why do you think that many of the men with ME do not have PAIN like we women seem to have???? I find that interesting? hmmmmmm
By 2025 - 50% of peep over 50 will have Alzheimers... now is that frightening or WHAT? I know if something doesn't change drastically...I will be in that group