I, too, have PPMS, and have had neurologists recommend Copaxone/glatiramer acetate as a treatment. So far I haven't done it, but, of the currently available drugs, it is the only one that shows any potential promise, from what I've learned.
I have been flirting with the idea of starting on Copaxone for almost a year now. I have found several medical papers that argue both sides of the issue; if you are interested, I can see if I can send them to you. You may already be familiar with them.
I've been working long hours lately, so it's been a couple of months since I've read them, but from memory, here's my summary of what they say:
-- The followup on the PROMiSe Trial (Copaxone/GA for PPMS) after it was called off : some (67?) test subjects opted to stay on GA and report their conditions. There was a definite trend toward less disability (measured, I think, by clinical exam and the EDSS) in men, as time went by. Yes, specific to men. I assume from your handle (Mick) that you fall into this group, as do I.
-- One study that showed that GA reduces the number of lesions that evolve into "black holes". A neuroprotective aspect of GA demonstrated (this may be what your neuro had read).
-- One study that looked at chemical indicators of diffuse nerve damage, which might be the same as brain shrinkage/density loss, in people on GA versus without GA. No difference was seen.
-- The Cochrane Report (?). A study of studies which was highly critical of the success rates reported by trials purporting to demonstrate benefit of CRABs for all forms of MS. Regarding Copaxone for PPMS: I read somewhere on this forum that a person with MS asked the Teva rep about the Cochrane report and its examination of the apparently very low efficacy rate. The Teva rep replied that they didn't think the Cochrane report's numbers were legit -- because they included people with PPMS in the sample they used. Well, that'd be us, so if Teva thinks that skews the efficacy rates, I guess they're admitting that Copaxone doesn't work so well for PPMSers.
And then there are the reports of people going into anaphylactic shock and other extreme and unpleasant reactions, and the delipidation (skin craters) that many people seem to get. Because of the nature of online forums, I can't seem to get an accurate feel for what percentage of users get these reactions ... certainly, the neuros act like they're giving out baby aspirin ("It's very well tolerated..."). But these effects, happening every day or night at "shot time," leave me very leery of starting it. Especially since I can't be sure if I have to stay until midnight or later at work on any given day, and I am keeping the MS battle a secret from my coworkers, as I work in the entertainment industry and need to get hired on new projects every couple of months. So I'm not sure how to fit in a nightly shot and possible unpleasant reactions if I'm still at work and under lots of pressure to get a ton of work done.
(Yeah, I know, I gotta find a new profession. I've been trying.)
Again, I'm recapping the above studies briefly and from memory, so please forgive any errors. If you're interested, I could provide links or send you PDFs of some of these articles.
I'd be interested in what else you've learned or decided since July on this matter.
As an afterthought, I think I'll also post this on the forum in case anyone else is interested in this thread. I just thought you might not revisit this thread, so I'm also sending it to you via PM.
BTW, I seem to be progressing very slowly without drugs, just doing an updated version of the Swank diet, lots of supplements, and exercise. I might not even be progressing as much, if I could get more exercise...but I'm working over 60 hours per week, plus a 66 mile round trip commute, so it's been hard to find the time, not to mention the energy. I am definitely way out of shape!