MS Meds Compared
June 8, 2005 6:59 PM Subscribe
After years of doctor visits, tests, pain, tingling, and everything else, my wife was diagnosed with Multiple Sclerosis. Her Neuro recommends Avonex; the decision on which med is up to us. I'm looking for non-biased, objective web sites comparing the various Interferon treatments. I'd also like to hear the experiences of others.
Why Avonex instead of Rebif? An intra-muscular injection seems quite painful! The conspiracy theorist in me says Big Pharma has 'influence' over doctors' choices - Is Avonex her best bet? I'm trying to find some objective comparisons.
Why Avonex instead of Rebif? An intra-muscular injection seems quite painful! The conspiracy theorist in me says Big Pharma has 'influence' over doctors' choices - Is Avonex her best bet? I'm trying to find some objective comparisons.
Hang on - Avonex is an intramuscular injection - Rebif is sub-Q, no?
What about Copaxone (from Teva)?
Anyhow at different times I have worked with Teva (Copaxone) and Serono (Rebif) and on non-industry-controlled MS websites (though not in the US). Through all of that I learned that it's really hard to sort through all of this. But the MS patient population is quite activist in nature (as is the case with many chronic conditions) and in my experience the manufacturers respect this and don't try and spin things as much as many people assume they do.
There are LOTS of industry-sponsored and independent online forums out there with people who have been down this road and can help. As well, many of these sites have tools and things that can help - for instance, with Copaxone you have to change the injection site each time, so there are lots of online and offline tools available to help keep track.
Anyhow the best info I found just now on Google is from the National MS Society, in particular the comparison chart in that link.
posted by mikel at 7:26 PM on June 8, 2005
What about Copaxone (from Teva)?
Anyhow at different times I have worked with Teva (Copaxone) and Serono (Rebif) and on non-industry-controlled MS websites (though not in the US). Through all of that I learned that it's really hard to sort through all of this. But the MS patient population is quite activist in nature (as is the case with many chronic conditions) and in my experience the manufacturers respect this and don't try and spin things as much as many people assume they do.
There are LOTS of industry-sponsored and independent online forums out there with people who have been down this road and can help. As well, many of these sites have tools and things that can help - for instance, with Copaxone you have to change the injection site each time, so there are lots of online and offline tools available to help keep track.
Anyhow the best info I found just now on Google is from the National MS Society, in particular the comparison chart in that link.
posted by mikel at 7:26 PM on June 8, 2005
There have been other threads in ask.mefi on MS, with long detailed answers on treatment questions. If you haven't read them already, I recommend them.
My short answer is that I've been on Copaxone for 10 years or so, and I'm pleased with it. I chose it over the beta intereron drugs because (a) my doctor recommended it, and (b) it appears to be more selective in its actions. All the current ABC drugs have about the same efficacy level, from what I know, so it's a matter of choosing whether you want flu-like symptoms once a week (beta interferon), or the bother of an injection every day (Copaxone).
posted by alms at 8:01 PM on June 8, 2005
My short answer is that I've been on Copaxone for 10 years or so, and I'm pleased with it. I chose it over the beta intereron drugs because (a) my doctor recommended it, and (b) it appears to be more selective in its actions. All the current ABC drugs have about the same efficacy level, from what I know, so it's a matter of choosing whether you want flu-like symptoms once a week (beta interferon), or the bother of an injection every day (Copaxone).
posted by alms at 8:01 PM on June 8, 2005
Disclaimer: don't have it (AFAIK, knock on wood); my mom does and I've watched her and talked to her about her meds...
Why Avonex instead of Rebif?
Ask your physician. Maybe (s)he thinks less frequent injections are better. Maybe (s)he feels it works better for some anecdotal reason.
The conspiracy theorist in me says Big Pharma has 'influence' over doctors' choices - Is Avonex her best bet? I'm trying to find some objective comparisons
Why would the physician give a damn? All three are hellishly expensive, so even at the most cynical extreme, no matter which one a physician picks, he'd still get a bribe or kickback from whoever made that drug, so they might as well prescribe the one they like the best.
They're all similar in effects and (moderately nasty) side effects, but not method of delivery and frequency of dosing. Odds are you'll end up trying at least two in any case.
Ask your physician again. If there's some concrete reason to favor Avonex, you might as well try that one first. If it's something fuzzier, you might try one of the subcutaneous drugs first if getting an IM shot every week is too oogy for now.
posted by ROU_Xenophobe at 8:16 PM on June 8, 2005
Why Avonex instead of Rebif?
Ask your physician. Maybe (s)he thinks less frequent injections are better. Maybe (s)he feels it works better for some anecdotal reason.
The conspiracy theorist in me says Big Pharma has 'influence' over doctors' choices - Is Avonex her best bet? I'm trying to find some objective comparisons
Why would the physician give a damn? All three are hellishly expensive, so even at the most cynical extreme, no matter which one a physician picks, he'd still get a bribe or kickback from whoever made that drug, so they might as well prescribe the one they like the best.
They're all similar in effects and (moderately nasty) side effects, but not method of delivery and frequency of dosing. Odds are you'll end up trying at least two in any case.
Ask your physician again. If there's some concrete reason to favor Avonex, you might as well try that one first. If it's something fuzzier, you might try one of the subcutaneous drugs first if getting an IM shot every week is too oogy for now.
posted by ROU_Xenophobe at 8:16 PM on June 8, 2005
My partner has had MS for about as long as I have known her. She was initially on Avonex, but changed a couple of years ago as she felt it was not as effective as it had been.
While it was only once a week, it did have a fairly heavy aftereffect, aches, lethargy, generally feeling unwell. She would take it late on Sunday afternoon, we'd have a nice dinner, and she would take it easy on the couch before going to bed early. By monday morning, the worst of it would be over.
She now takes copaxone, which is a daily injection, but not nearly as deep, and with less side effects for her.
Your wife would probably appreciate it if you learn to administer the injections. I've now given hundreds, and I used to be the biggest needle-phobe in the world. Still, it's kind of icky stabbing your loved ones with sharpened steel!
posted by tomble at 10:59 PM on June 8, 2005
While it was only once a week, it did have a fairly heavy aftereffect, aches, lethargy, generally feeling unwell. She would take it late on Sunday afternoon, we'd have a nice dinner, and she would take it easy on the couch before going to bed early. By monday morning, the worst of it would be over.
She now takes copaxone, which is a daily injection, but not nearly as deep, and with less side effects for her.
Your wife would probably appreciate it if you learn to administer the injections. I've now given hundreds, and I used to be the biggest needle-phobe in the world. Still, it's kind of icky stabbing your loved ones with sharpened steel!
posted by tomble at 10:59 PM on June 8, 2005
here is another AskMe MS thread, there i linked to a friends excellent recap of his experience after a year of MS treatment, first on Avonex
posted by yeahyeahyeahwhoo at 6:35 AM on June 9, 2005
posted by yeahyeahyeahwhoo at 6:35 AM on June 9, 2005
neilkod: The conspiracy theorist in me says Big Pharma has 'influence' over doctors' choices
ROU_Xenophobe: Why would the physician give a damn?
If your doctor belongs to an HMO or other healthcare organization, he or she may be constrained to only prescribe medications that are on the organization's formulary. Placement of a drug on a formulary may be determined by a number of factors, primary of which is financial benefit to the HMO.
Also, doctors are just as prone to being swayed by promotions and free samples as anyone else. They do not personally investigate the efficacy of every drug that's out there. Most develop a list of "favorites" that they prescribe, and are slow to consider treatments that are not familiar to them.
posted by SPrintF at 7:28 AM on June 9, 2005
ROU_Xenophobe: Why would the physician give a damn?
If your doctor belongs to an HMO or other healthcare organization, he or she may be constrained to only prescribe medications that are on the organization's formulary. Placement of a drug on a formulary may be determined by a number of factors, primary of which is financial benefit to the HMO.
Also, doctors are just as prone to being swayed by promotions and free samples as anyone else. They do not personally investigate the efficacy of every drug that's out there. Most develop a list of "favorites" that they prescribe, and are slow to consider treatments that are not familiar to them.
posted by SPrintF at 7:28 AM on June 9, 2005
mr whoo, that link leads to a 'forbidden access' page to me...
posted by mdn at 10:00 AM on June 9, 2005
posted by mdn at 10:00 AM on June 9, 2005
If your doctor belongs to an HMO or other healthcare organization, he or she may be constrained to only prescribe medications that are on the organization's formulary.
Sure, but that's nothing to do with Evil Big Pharm swaying the physician's decision-making, and neilkod explained that they have a choice.
Also, doctors are just as prone to being swayed by promotions and free samples as anyone else.
My point was that, unless one of the Evil Big Pharm companies is too stupid for words, there will be promotions and free samples for all of them. Except that there might well be no free samples for a hideously expensive drug that's injected, but anyway. So you might as well prescribe the one you like best. No need to modify your decision-making, because in all likelihood any prescription decision you make will be "rewarded."
neilkod seemed to be worrying that the physician was recommending Avonex for some sinister kickback-like reason. That seems very unlikely to me. More likely, Avonex is just what the physician is used to or likes for one reason or another; maybe a good reason, maybe what amounts to superstition from anecdotal observations.
posted by ROU_Xenophobe at 11:05 AM on June 9, 2005
Sure, but that's nothing to do with Evil Big Pharm swaying the physician's decision-making, and neilkod explained that they have a choice.
Also, doctors are just as prone to being swayed by promotions and free samples as anyone else.
My point was that, unless one of the Evil Big Pharm companies is too stupid for words, there will be promotions and free samples for all of them. Except that there might well be no free samples for a hideously expensive drug that's injected, but anyway. So you might as well prescribe the one you like best. No need to modify your decision-making, because in all likelihood any prescription decision you make will be "rewarded."
neilkod seemed to be worrying that the physician was recommending Avonex for some sinister kickback-like reason. That seems very unlikely to me. More likely, Avonex is just what the physician is used to or likes for one reason or another; maybe a good reason, maybe what amounts to superstition from anecdotal observations.
posted by ROU_Xenophobe at 11:05 AM on June 9, 2005
All or most of the companies likely have a compassionate use program that physicans can apply to for their patients. This process is helped along by reps, usually, but they don't make the decision - that's usually made on the merits of the case in a special office in the pharma company. That office wouldn't usually have access to local or office-level sales data (by company rule and maybe law) so they wouldn't be swayed by the characteristics of the physician's practice or anything of the kind.
The insurance issue is a more real issue - if the FDA has approved a product and approved the wording on the label, that doesn't mean that all insurance companies will list it in their formulary. And doing so IS often (not always) contingent on the insurance company getting a volume discount from the manufacturer. But that's not a problem of pharma-to-physician kickbacks, that's at a whole other level.
Physicians can, to varying extents, prescribe medicines that aren't on the insurance company's formulary as well, but it depends on their relationship with the company and many other factors. If you think the formulary that the physician is working to is changing his/her recommendation, try asking for a second opinion from another, independent physician. I would do that anyhow for such a decision.
posted by mikel at 12:51 PM on June 9, 2005
The insurance issue is a more real issue - if the FDA has approved a product and approved the wording on the label, that doesn't mean that all insurance companies will list it in their formulary. And doing so IS often (not always) contingent on the insurance company getting a volume discount from the manufacturer. But that's not a problem of pharma-to-physician kickbacks, that's at a whole other level.
Physicians can, to varying extents, prescribe medicines that aren't on the insurance company's formulary as well, but it depends on their relationship with the company and many other factors. If you think the formulary that the physician is working to is changing his/her recommendation, try asking for a second opinion from another, independent physician. I would do that anyhow for such a decision.
posted by mikel at 12:51 PM on June 9, 2005
Avonex and Rebif both have compassionate-use programs. Not sure about Copaxone, but I am sure it's a great deal less expensive.
IM injections are actually less painful than subcutaneous injections. SC injections distend and mechanically deform the layer of the skin that is rich in pain receptors. Muscle is much poorer in pain receptors. Neither one is a big deal.
All three of the medicines I mentioned appear to decrease relapse rate in chronic relapsing-remitting MS by about 30%. Most of the MS experts I've known have strong opinions as to which one is best, but they all freely admit that the opinions aren't based on how it's going to benefit the patient - in the absence of obvious evidence that one is superior, they pick one for other reasons. I've found it easier to get my (mostly indigent) patients onto the Avonex compassionate-use program, and for some reason my professors here in NYC aren't that excited about Copaxone. My professor in med school (L.A.) only used Copaxone but he'd been involved in the clinical trial and his patients were all under study for long-term followup.
If you guys had ever been to a neurology convention, you'd laugh. Here we are, wandering around the convention floors with our little AAN bags and gargantuan IQs, and friendly people are giving us pens and, at the worst, trying to push-poll us into liking their drug better. I sat next to a drug rep on a plane the other day who had a little database of prescribing information on all the doctors at the university she was about to visit; presumably some of them were 'targeted' for behavior modification. I'd like to think most of the docs I know care enough about their patients not to buy into these little games.
posted by ikkyu2 at 7:44 AM on June 10, 2005
IM injections are actually less painful than subcutaneous injections. SC injections distend and mechanically deform the layer of the skin that is rich in pain receptors. Muscle is much poorer in pain receptors. Neither one is a big deal.
All three of the medicines I mentioned appear to decrease relapse rate in chronic relapsing-remitting MS by about 30%. Most of the MS experts I've known have strong opinions as to which one is best, but they all freely admit that the opinions aren't based on how it's going to benefit the patient - in the absence of obvious evidence that one is superior, they pick one for other reasons. I've found it easier to get my (mostly indigent) patients onto the Avonex compassionate-use program, and for some reason my professors here in NYC aren't that excited about Copaxone. My professor in med school (L.A.) only used Copaxone but he'd been involved in the clinical trial and his patients were all under study for long-term followup.
If you guys had ever been to a neurology convention, you'd laugh. Here we are, wandering around the convention floors with our little AAN bags and gargantuan IQs, and friendly people are giving us pens and, at the worst, trying to push-poll us into liking their drug better. I sat next to a drug rep on a plane the other day who had a little database of prescribing information on all the doctors at the university she was about to visit; presumably some of them were 'targeted' for behavior modification. I'd like to think most of the docs I know care enough about their patients not to buy into these little games.
posted by ikkyu2 at 7:44 AM on June 10, 2005
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posted by ericb at 7:25 PM on June 8, 2005