There's a lot of nonsense in this thread that needs a corrective.
You can currently get treated with PPS if you have a doctor who is willing to treat you, assuming they assess you to be a suitable candidate.
You do not need to be part of the SAS. You do not need to have been part of the SAS. You do not need to be on a trial. You do not need to have been part of a trial. You do not need to have been rejected from the SAS. You do not need to have been rejected from a trial. The government does not need to sign off on your treatment. You do not need to have the PPS supplied by Paradigm. You can access it without wasting Paradigm's resources. Supply is not restricted to just support 8 people. You do not need to wait 3 months. Doctors do give it to people off label. etc. etc. etc.
Seriously. I've done this twice.
You do not need to spend $4k. My cost of treatment was about $1k - about $300 for the drug supplied in injectable format, the balance in MRI and doctors fees. You do not need to be in and out of the clinic 2x/week - I was shown how to give myself a subcutaneous injection, and I treated myself at home.
Part of the confusion here is that there are several preparations of pentosan available - Zilosul, Elmiron, Cartrophen, perhaps others. Those names refer to a registered product, not a chemical. There is only one DMF for any form of pentosan for human application, so I assume that the active ingredient in Elmiron and Zilosul is the same. These are different products (SubQ and oral) of the same material. I don't know if Bene supply the material for Cartrophen, but there are other suppliers of PPS. If you read a research paper on PPS it will generally disclose the source of the materials, and checking one now I see the PPS was supplied by Chong Kun Dang Pharmaceutical Corporation of South Korea. So there are other suppliers of PPS out there.
None of which matters because only Bene holds a DMF for PPS, so only Bene PPS will be available for human use, and Bene PPS will only be available for injection into humans in the form of Zilosul, not any other preparation of Bene PPS. Incidentally, I don't think Zilosul is the only effective form of PPS for OA. I'd be pretty confident that any structurally similar PPS would be similarly effective. The key distinction is that, of many potentially effective sources of PPS, only Zilosul will become legally available as a human injectable.
We know that PPS does not work for everyone. When I met with Samra he spent a lot of time hosing down any expectations I might have about what results I would see. He advised me on exercise regimes to strengthen supporting structures, functional strength training, good diet and sleep, etc. He warned me not to expect too much, and felt that the PPS might be the "icing on the cake" of these other interventions. I think this was entirely responsible and I respect this approach. At the outset he was not overly optimistic, but given that there were no contraindications and that I remained interested in PPS, he was happy to prescribe the treatment. I'm sure Hammer24 received similar advice as he has described.
After I completed the treatment with excellent outcomes he was surprised and pretty happy about how well I had responded. After my second treatment, and my MRI's showing the disappearance of bone marrow lesions, he was quite impressed with my outcome.
"You're trying to tell us that you went into some random doctor with sore knees and he told you that oh I've got some stuff sitting on the shelf but you have to come back 2 times a week for 6 weeks have it intravenously it's only a trial drug it's going to cost you $4,000 plus and it doesn't work very well, and you said OK let's do it."Well, that's putting it a little glibly, and in my case it was a sore back, the drug was in a freezer at a specialised compounding pharmacy, I treated myself at home, and it only cost about $1k, but yes, essentially that is exactly what happened.
(20min delay)