This Is MS Multiple Sclerosis Knowledge & Support Community

Hi All:

I haven't posted for a while but I was interested to see if anyones neuro is advising them to use copaxone for ppms as mine is?

I've never had a relapse, just a slow decline over 6 years.

I have a very high degree of confidence in this group. They are researchers and only treat MS patients. It seems they believe that copaxone will provide some level of "neuro protection." This has put me in a quandary because I know the ppms study was shut down because it became obvious it wasn't going to work. I would be happy to try it but I really can't spend the $7000 it would cost me without better evidence that it would alter the course of this disease. I know sometimes they want to try "something" because it's hard to watch people suffer but I have an obligation to my family not to "experiment" with money which might be better spent on other needs.

So... if anyone has any experience with ppms and copaxone I'd sure like to hear about it.

Thanks also to all of you who post often. I read this forum daily and it really helps to know I'm not in this alone.

Thanks
Mick

Mick,

I am new to MS, but I have been thinking a lot about the cost of the CRABs drugs and whether they are worth it. Their value seems to be even more poorly defined for PPMS than it is for RRMS. But then it's hard to demean the value of something that may reduce your progression even somewhat.

I have recently been thinking I may start just with Minocycline, which is about 90% less expensive. I have looked carefully at the researh of Dr. Metz et. al. from the University of Calgary -- both with their preclinical mouse models and their small human trials. The research seems to have started based on anecdotal accounts that people with MS and acne being with Minocycline saw an improvement in both their acne and their MS.

Dr. Metz's human trials were done on people with RRMS. But I haven't read yet if their mouse model is similarly RR. It seems to me that for the mouse experiments to work, the mice would have to have an immediately progressive disease. I have read several forum comments from people stating there is little or no relationship between the mouse version of MS and human MS. However, the scientists keep using the mice and there seems to be at least some indication of a relationship. The results of Dr. Metz's human trials on 9 people (the news accounts say 10 people but it looks like one person dropped out early and wasn't really effective for the study) are impressive. The mouse studies, which I found very interesting, seemed to indicate that Minocycline has a neuroprotective component.

I would expect most doctors to argue that Minocycline is not proven to work with MS because good, large studies have not been done. Unfortunately, there may never be large, controlled, studies to determine the effectiveness of Minocycline for MS because the cost of a good study with regular MRIs and exams runs into the millions of dollars, and no drug company will put up that kind of money for a generic drug. (I have seen some forum comments suggesting the MS Foundations don't put up money for a large Minocycline study because they are beholden to the CRABS manufacturers, but when I look at their balance sheets I think the more likely reason is they just don't have enough money.) In fact, Dr. Metz is now doing a slightly larger study comparing Copazone alone with Copaxone plus Minocycline, with the study mostly paid for by the manufacturer of Copaxone. But it seems unlikely that the Copaxone manufacturer would fund a study of Minocycline alone compared to Minocycline plus Copaxone.

Some doctors may have other objections to Minocycline, such as not knowing long term side effects or developing antibiotic resistence. Dr. Metz addresses several of these objections in her journal articles and basically points out that the medical community has a great deal of experience with Minoycycline.

There is some discussion in other parts of the This Is MS website on minocycline and other antibiotic regimines, including by people with progressive MS. People's experiences seem to by mostly positive but somewhat mixed. Howver, a lot of the discussion revolves around a mixture of tetracyclines and other antibiotics. Although not discussed by Dr. Metz, other literature I have read seems to suggest that Minocycline would be more effective than the other tetracyclines or other antibiotics.

If you Google "Dr. Metz" and Minocycline, you can get at least some of the journal articles for free. You might print the articles and bring them to your neurologists to see if they think it is more cost effective to try Minocycline first. Given that your doctors are MS specialists, they are probably already familiar with the research.

I'll be interested to hear what they say.

Hi David,

Thanks very much for the info. I hadn't heard about this before. I will start digging. If it's inexpensive and not harmful whats the worst that can happen? Especially if there is some small scale positive indications? The copaxone question seems much less certain and way more expensive.

Thanks again for all the work,

Mick

Hi Mick,

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!

Be well,

Longing4Cheese
aka
Jack Sprat

I am "lucky" in that I am still RRMS, but this topic was interesting.

Longing4Cheese, I've been on Copaxone for a year for RRMS. You can take the shots anytime during the day (as long as its regular-ish) so fitting it in to your schedule shouldn't be impossible. I've had a bad reaction 4 times - basically I've had to "curl up and die" for twenty minutes and then its fine. For me, it certainly wouldn't be a reason for not taking it.

Cyclops

I have had an interesting turn in my MS journey:

I was Dx in June 2007, and have seen a total of three different neuros, at least one of whom is a well-known MS researcher and professor at UCLA. Everyone said I had PPMS.

However, a few weeks ago I saw a top MS specialist at USC, and he questioned me in more depth about my health history, looked at my MRIs, did a clinical exam --- and he thinks that I had a subtle case of RRMS which is morphing or has morphed into SPMS. Now, a year and a half ago, I strongly rejected the idea of taking Copaxone because of a complex mixture of factors. I have recovered much emotional strength since the shock of the diagnosis, I have had time to do more research, and I have had time to try out an approach of just diet, supplements, and exercise. I have also seen myself acquire some more symptoms on this program, and my thought process has gradually moved to more acceptance of the idea of taking Copaxone, despite its low efficacy rate and complications.

Anyway, I'm not quite sure if being re-diagnosed as RRMS >> SPMS is better or worse or neither compared to being PPMS. I suppose I'm no longer in such an orphaned minority group, and have the benefit of being in a classification that has more research history and possible future trials. Then again, progressive MS versions may or may not be biologically same or similar. Whether I have PPMS or SPMS, I think, the Copaxone is the one drug we have currently that is indicated for both, leaving out stronger and more risky stuff like Rituximab.

I like this doctor better than any of the others, and, although I have only seen him so far at USC (and will be assigned to someone else who isn't so busy with research), I have positive expectations about the MS Comprehensive Care Center at USC.

I'll have a third round of MRIs in December -- after 18 months of being on my diet and supplements and no drugs (but plenty of stress and sleep deprivation, unfortunately - that's show biz) before I start on the Copaxone. I hope to get some sense of the trajectory pre-drug.

Am I right in these suppositions? Is it better to be SPMS than PPMS? Any comments on this reclassification, or on Copaxone for SPMS?

Thanks in advance for sharing your experience and knowledge.

Jack Sprat, still Longing4Cheese

Sorry, I don't have any answers for you, since I'm pretty new at this (diagnosed in August). I do have a question. How did they determine initially that you had the PP form of MS. One nurse told me that the only way to tell is to watch the progression for some period of time; then you can look back and say that it is primary progressive. I thought this was kind of a crock when I heard it, but I wasn't sure.

Thanks.

Mike

If you haven't had any identifiable "attacks" or spells or symptoms that occurred, lasted days to weeks, then got better (or mostly better), then you don't neatly fit into the description of RRMS, which 85% of MSers are. If you have very gradually declining ability to walk, weakness in a limb or a whole side of your body, etc., it looks progressive.

The difference in my recent re-diagnosis came from the neuro's questions about past illnesses/phenomena. I had remembered a couple of strange things that had happened to me in the late 1980s and early 1990s, which had been explained away as being caused by a virus (vertigo), a fungus (burning feet), etc. This new doc thinks those were early MS attacks, though mild.

Quote from him: "Why would you diagnose this as something that's untreatable instead of something treatable?" I'm not sure how much this is "code" for "if we Dx you RRMS, your insurance will pay for meds, but if you're PPMS, we'll have trouble getting approval".

Anyway, I have now to learn what evidence there is, if any, that the physiology of SPMS is different from that of PPMS. (There has been a suspicion among MS researchers that PPMS is its own disease, with a different etiology.)

I hope this helps.

Longing4Cheese, I am Jack Sprat

I thought I read at some point that rr evebtually turns into pp over the years.
I've been on Copsxone for about a year now, and have gotten progreesively worse, But, then you never know what it would have turned into if I hadn't taken it.....
With regard to minocycline, I have another autoimmune disease that used to be treated solely with steroid use, now doxycycline has been recommended.
Never discussed the combination with my neuro, (tell ya the truth, i haven't been taking it) I also was uncomfortable with long term effects of Abx regimin. and sinc the other dx has been fairly quiet, I figured one less drug I can do without...
It's curious though that the drug has been recommended for 2 different autoimmune dx.

I have PPMS and have also been recommened for Copaxone in tandem with Novantrone treatment.

My Dr. Sipe, does alot of reaseach and apparently has had some luck with this combo treatment. I said what were the numbers? (excel geek, sorry)
75 out of 100 had some positive outcome, from improvement in symptoms to arrested progression.

So I have just completed my first 3 Novantrone treatments. When I got in June for Treatment #4, they will be giving me a Rx for copaxone.

Sipe's first recommendation was for Rituxan, but insurance turned this down. One of my strategies was to do this regardless of the outcome and then push on the insurance for Rituxan long term. Yea, I am stubborn...

Hope this helpsl.l