Copaxone

[HereIam]

Is there any reason whatsoever for a patient (that's me!) who has been definitively diagnosed with SPMS to be on Copaxone?

I ask because there is nothing else to be done for me and the neuro has suggested going back on Copaxone, that it can't hurt and there is evidence it does reduce brain atrophy in late disease.

It's been left up to me. I don't know. Do you?

[Redwings]

If the key concept is "whatsoever," then I'll propose that a chance of being beneficial of, say, 0.001% is better than an absolute 0% chance, which is what you have if you do nothing. If "whatsoever" includes some suggestion from an experimental (mouse?) study that Copaxone might theoretically help with neuroprotection in humans, then that might be a reason.

You don't just have SPMS. You have longstanding SPMS. My impression is that your neuro's suggestion of Copaxone because "it can't hurt and there is evidence it does reduce brain atrophy in late disease" is based on very broad generalizations that may not (OK, probably don't ) apply to you.

First, Copaxone does have risks and side effects, so it isn't absolutely true that it "can't hurt." Second, I haven't seen the report(s) about evidence of reducing brain atrophy in late-stage disease. But based on general principals of secondary degeneration, I'm inclined to think that that the bulk of that evidence is based on early or long-term use of Copaxone -- beginning in the relapsing-remitting phase -- in which there were still relapses in the secondary progressive phase. I don't believe it applies to cases where Copaxone is/was started (or restarted) years after the final relapse. And I'll tell you why.

First, Copaxone acts as a myelin "decoy." That's useful when there's evidence of relapses and/or lesions on MRI to indicate that myelin is being attacked by antibodies and inflammation. But since you haven't had new lesions or relapses in years, there's no evidence that your myelin is being attacked and thus there's no need for a decoy. You won't benefit in putting out a duck decoy if there aren't any ducks in the area.

Second, there is some evidence that Copaxone has an anti-inflammatory property. That's helpful when there's evidence that inflammation is present. But, again, without relapses or new lesions, there isn't evidence that you have neuroinflammation for Copaxone to act against. (Now, everyone has some inflammation going on somewhere, but that gets very theoretical and is outside the scope of your situation.) Another indication that the anti-inflammatory property probably won't be helpful in your case is that strong anti-inflammatory drugs -- steroids -- weren't helpful for you.

Third, any suggestion of neuroprotective properties of Copaxone is based on very limited, experimental investigation. That suggestion is going to have to come a long way to explain or disprove the findings of large, well-designed studies of progressive MS in which Copaxone was found to have minimal to no effect in slowing the rate of disability progression. A large study of Copaxone in PPMS was stopped early because there was minimal indication of effectivity (and only then in men). If there was going to be evidence of neuroprotection in progressive MS (primary or secondary), there was plenty of opportunity for it to have been revealed in those trials.

All things considered, the only reason whatsoever that I can see for you to go back on Copaxone is the idea that, if there's any possible chance of even minimal effectiveness, then doing something is better than doing nothing. Is "any possible chance" of minimal effectiveness enough benefit to offset the (albeit small) risks, costs, and effects on your quality of life?

[HereIam]

GOOOOOAAAALLLLL!!!

Redwings! Do you have any idea how great you are to those of us seeking advice? Well, I'm here to tell you that you are a peach.

That you know me so well shows an amazing level of caring and understanding. You have read my posts over time, you know who I am, I love that, I trust your advice.

And, as usual, you have put in written orderly form all the crappola that's been floating around in my head. Is there a cable that has our brains attached to one another and I just haven't noticed it there? There must be.

I believe that once I decline this offer from the neuro then perhaps they'll be done pretending that there is anything, anywhere they can do for me. That will be a relief in a way.

Blessings and I hope today is a good one for you.

[MaynardMM]

That was a fascinating response. I have long suspected that Copaxone is doing nothing for my mom's progressive MS. She's been taking it for a decade and has had steady progression of symptoms. It can't be proven that she would have done worse without it, but considering how severely disabled she is already, that seems unlikely.

[HisHelper]

Copaxone

Hi! I just joined a few minutes ago. My husband has secondary progressive and has been disabled from it for two years. His neuro has kept him on Copaxone this whole time. I have wondered if it is doing any good. The response on here was helpful reading. Thank you. Is there any alternative to Copaxone? Anything that might slow the proression?

Thanks!

[STEVEP]

"That was a fascinating response. I have long suspected that Copaxone is doing nothing for my mom's progressive MS. She's been taking it for a decade and has had steady progression of symptoms. It can't be proven that she would have done worse without it, but considering how severely disabled she is already, that seems unlikely."

Yes it is a great response and well thought out.

If your mom is still progressiong I am really surprised that your dr has not stepped up her treatment a little harder. Copaxone quit working for me, so my neuro satrted me on Novantrone until I could no longer take anymore doses. That was about 5 years ago. She has suggested Tysabri, but more or less left the subject hanging. She kind of has the wait and see approach. I mentioned that since I was secondary, would that be an issue. She stated there are was around that.

In the mean time, she has stated that sometimes the disease burns itself out and quits progressing. I am hinging on that theory for now.

[JerryD]

Hi all,
I have been on this site for a little while and have noticed that Redwings' answers are very clear and concise. So pay attention !
Now, I suspect that the neuros who keep us PPMSers and SPMSers on Copaxone, are getting a little somethin' somethin' for pushing this stuff 'off-label'. 'First, do no harm' !
I, myself, am dx'd PPMS and refused Copaxone suggested by my neurologist.
I do not understand why all of you keep thinking that the medical world has something for us ! Pills, Shots...There isn't any !
I gave up on that thought and am working on diet/foods as a treatment option. There have been 3 doctors ( real AMA MDs ) who have been treating this disease for many years.
Dr. Roy Swank, Dr. John Mc Dougall and Dr. Terry Wahls are on the internet in lots of places including You tube. No pills, no shots, nothing proprietary, no side affects, just behavior changes and healthy eating and supplements.
Good luck to you all

[mjideas]

Things suggested to me for secondary prog

Hi everyone. I joined today and this post caught my eye.
Right now I see a neuro at BWH in Boston. I have seen her twice. She is in her 1st year of practice as an attending (and leaving in June) so I will be starting over again soon. She was very gun-ho on using copaxone as a neuroprotectant based on a recent study (possibly done by Omar Khan. MD)

6 months at 2nd visit she suggested Tysabri because I tested negative for the JC virus. I've been on a fact finding mission about that. No conclusions so far. She told me the clinic is focusing now on the progressive side of the disease. One Dr is using an ALS drug on a patient (med name starts with an R).

She mentioned Gilenya but that would be a no after what I've read.

I almost think they don't know what to recommend and the Drs I've consulted don't really trust the Rx company's findings.

Don't know if this post is any help but thought I'd share my exp. My main interest is to halt prog. obviously but also cool down inflammation and that is an area I am looking into.

Melanie
dx 98, 22yrs ms
at least 5-spms

[MaynardMM]

"If your mom is still progressiong I am really surprised that your dr has not stepped up her treatment a little harder."

Well, she was seeing a neurologist until she became completely housebound. She hadn't seen a doctor for several years, which I know was awful, until she was hospitalized last year for a colostomy. However, the MS specialist she saw in the hospital was far from helpful. She said that there wasn't anything besides Copaxone that would help at this point. I am devastated to think that maybe something should have been done years ago that would mean she wouldn't be doing as terribly as she's doing now.