Copaxone--why?

[J-Bo]

As you can see in my sig, I have PPMS. Well, now that's being called into question, and my (fairly) new MS doctor thinks it may be SPMS. At any rate, he wants me to try Copaxone, and I can't figure out why. I tried to question his nurse, who communicated this new plan with me, asking her why this makes sense when this med is not thought to help with progressive forms of MS. We just went in circles on the phone, and I suspected that maybe this was just a hail Mary pass since there's nothing else they can really do for me. Like maybe he's thinking, "Who knows? Why not just try something instead of doing nothing?" And maybe because this med is safer than a lot of them.

So I guess my question is what would any of you do in my situation? I'm really getting tired of going from doctor to doctor, and doubting pretty much everything they tell me. Seems like at some point, I need to trust someone. This guy is reputable, and from a very well-respected organization, and also pretty involved with research. So I'm thinking that maybe it's possible he knows something I don't (yes, I realize how arrogant that sounds). But everything I've ever read tells me with almost 100% certainty that this is not going to help. Any opinions?

[jreagan70]

Hi J-Bo:
You've summed up the situation perfectly. DMDs in PPMS is treating based only on hope and not on medical evidence.

Throwing a hail Mary pass doesn't make your neurologist untrustable. But if there were any evidence of effectiveness of a DMD in PPMS, it would be all over the news, and you wouldn't have to wonder whether ONE doctor knows something that no one else knows.

After having been through the injection site reactions of Copaxone (luckily I never had an IPIR), if I knew there wasn't any proof that it was doing anything for me, I'd pass on it.

[JerryD]

J-Bo,
Maybe your neurologist isn't an MS 'specialist'. My previous neurologist wasn't an MS 'sxpecialist'. He prescribed Copaxone! One shot daily ! everyday !I told him to 'pound sand'. I'll bet he was going to get an 'honorarium'. I spent 5years trying to find an MS 'specialist'. He prescribed Tecfidera, an oral pill, 2 times daily. I've been on it for about year.
I am also PPMS. Whast yolu need to understand is that none of the drugs available have been tested on subjects that are dx'd PPMS, so no one knows. Doctors can use 'approved meds' 'off label'. So they do. Especially, when they don't have anything else to offer. It's a 'Hail Mary'! That is true for much of the neurologist trade! It sucks. That's why I am watching the MD1003 developments ! Good luck

[jreagan70]

Whast yolu need to understand is that none of the drugs available have been tested on subjects that are dx'd PPMS, so no one knows.

Now there's a myth that won't die.

Some of the currently available drugs have been tested in PPMS and they didn't work. Gilenya was tested in PPMS in the INFORMS trial. There was no difference between the Gilenya group and the placebo group. Rituxan was tested in PPMS and there was no significant difference in disease progression between the Rituxan group and the placebo group. There have been other studies for which no results were reported, which means that they weren't successful.

Current drugs work on the inflammatory component in MS. And since PPMS isn't primarily inflammatory, the drugs have little, if any benefit. The issue is not that some of them haven't been tested in PPMS -- the issue is that they have and don't work in PPMS. And if they don't work, they can't be FDA approved and won't be used off label. And that surely is why more manufacturers of the immunosuppressent drugs aren't spending money on trials they know won't be successful.

So J-Bo, more support for everything you've read about why there are no effective treatments for PPMS.

[DianeD]

Copaxone for PPMS

My understanding of Copaxone is 2 main points. One it is not an interferon, which is a benefit of taking C over other DMDs.

Two....It is for RRMS. This is what I've read and what my Neuro said.

I don't know why a neuro would prescribe C otherwise. I think I'd do some reseach prior to taking this very expensive drug.

[J-Bo]

Thanks everyone for all of your responses.

I can only conclude that the only explanation could be the hail Mary. There is zero chance that my doctor is unaware of the data--he's an MS specialist who is deeply involved in research within an organization that I'm sure you've all heard of. And I don't believe that he's unethical and somehow personally benefiting from prescribing this particular medication.

If there are any other possible explanations, I can't think of what they would be. I thought maybe one of you might think of one.

I used to be on Tecfidera, but my WBC got too low, even after having been off of it since last August. So I think he probably chose to try Copaxone simply because it's one of the safest, and won't lower my WBC, not because it has any better chance of efficacy than anything else. And I kind of get that line of thinking: in the face of relentless progression and probable devastation, at least try something, but do no harm.

I said yes when I talked to his nurse, but I have yet to receive the papers in the mail to fill out, so I have time to think it over. I'll let you know what I finally decide.

[Mable]

I know I'm a little late here, but your doc may be correct. Some MS specialists no longer think of the disease as relapsing or progressive. Rather, they understand that there is an inflammatory process and a degeneration process--likely driven by old inflammatory damage.

PPMS, the theory goes, is really RRMS that went unnoticed and transitioned to a primarily degenerative disease-so it's really SPMS.

If you have any new lesions or attacks, you're doctor will want to stop them because they create immediate damage, and then, later, neuro degenerative damage--which comes across as progressive disease.

None of this is proven, but more and more docs are thinking this way.

[J-Bo]

Hey thanks, Mable. That's really interesting and encouraging, especially since I decided to go ahead with it and started on the 40 mg 3x/week. So far no reactions except for a temporary lump and minor irritation. Actually injecting myself isn't so bad. I've never minded needles too much, and this one is so thin and short that I barely feel it going in.

Also, my insurance covers it, and I got the $0 copay. But I have CVS/Caremark, so the recent news about them dropping three MS meds makes me wonder if they might do the same with Copaxone, or at a minimum, make me switch to the every day generic one.

[Mamabug]

The National Multiple Sclerosis Society says that the U.S. Food and Drug Adminitration has approved many of the MS meds, including Copaxone, of RRMS, and also for SPMS and PRMS in those people who have continued to have relapses. Doesn't comment on PPMS, in this article.

Sounds like you're not sure if you have SPMS or PPMS. And, I'm not sure if you continue to have relapses.

Copaxone has been much more effective for me, personally, at reducing both the frequency and the severity of my MS flares, as compared to Betaseron.

Hope it helps you as well.

http://www.nationalmssociety.org/Tre...MS/Medications

[Holly Golightly]

?

What is hail mary pass that some of you are referring to? I don't understand what it means.

[mom 2 4 cats]

"Hail Mary" is a football term used when everything else has been tried and the whole team is praying for a last chance effort to win the game.

[Holly Golightly]

"Hail Mary" is a football term used when everything else has been tried and the whole team is praying for a last chance effort to win the game.

Ahhhh. Thanks for enlightening a sports-illiterate Protestant mom 2 1 cat!