Copaxone - daily vs. every other day???

lunarrays · Post by **lunarrays** » Sun Apr 12, 2009 11:21 am

I have read that, according to some small studies (http://www.thisisms.com/downloads/Cop_E ... er_Day.pdf), use of Copaxone every other day had the same outcome (maybe even slightly better) as daily use. So, has or is anyone injecting Copaxone on alternating days?

LR1234 · Post by **LR1234** » Sun Apr 12, 2009 12:44 pm

I am due to go on copaxone and I was thinking starting off every other day. I am tiny in weight and size and I can't imagine that 20g a day is going to be right for everyone.

Alicia · Post by **Alicia** » Mon Apr 13, 2009 8:00 am

Hello,

I took Copaxone for about 8 years. For about the first 3 years I injected it every day. I started having bad reactions and lipotrophy. I also read about the study regarding Copaxone every other day was about just as effective as every day. I started taking Copaxone every other day and did that for about 5 years. It did cut down on the bad reactions because I wasn't taking it every day. I did the same as far as relapses taking Copaxone every other day vs every day. About two weeks ago I stopped taking Copaxone because due to the tissue damage from taking it so long, I was down to only one injection site I was willing to use and I started having systemic allergic reactions to this medicine when I would have a bad reaction which was about once every two weeks. With the lipotrophy disolving all the fat around the injection sites it is really hard to avoid hitting a vein when I inject which is what causes the bad reactions.

Alicia

Needled · Post by **Needled** » Mon Apr 13, 2009 8:31 am

LR, I had the exact same issue/question. I asked my neuro how the dose could be the same for a 5’ female weighing 100 lbs (I'm not quite that small, but still...) as it is for a 6'3” guy weighing 300 lbs. It just doesn’t make sense. He didn’t have an answer, so I decided to stay on the every day routine since everything was going OK. It still is OK, but like Alicia, I am starting to get some lipoatrophy that limits my injection sites a bit. When I go back next month for my annual checkup, I am going to ask him about shooting up every other day. I doubt he'll like it, but I'll see what he says. That would be such a nice break.

N

lunarrays · Post by **lunarrays** » Tue Apr 14, 2009 9:31 am

I know the original study was small, but the results seem to warrent a larger study. My guess is that cutting your intake by 50% = 50% in profit loss for the maker, so I don't expect them to initiate any studies. They do have a pitch on their site to keep you injecting daily, but nowhere do they say it would not be good to go every other day. So I think I'm going to start every other day and see where that takes me.

ursula · Post by **ursula** » Wed Apr 15, 2009 5:48 am

lunarrays wrote: My guess is that cutting your intake by 50% = 50% in profit loss for the maker, so I don't expect them to initiate any studies.

I don´t think so.
If it was just as effective to take it every other day, Teva would be glad because they would get much more customers.
Of course the prize would stay the same or will be even higher (because they have to start an new study)!
By the way Rebif (3 times a week) is about 30 % more expensive than Copaxone..
Does anyone have a link from the study?

Arcee · Post by **Arcee** » Wed Apr 15, 2009 5:57 am

I too have been taking Copaxone every other day, for almost a year. I started doing that because I could only find enough sites with the right kind of fat to do it that often. I also couldn't believe the dosing would be the same for everyone and have always been (overly) sensitive/responsive to medication so I figured it might make sense. And like was already mentioned, the manufacturer would not have had incentive to have tested it at the lower dosage. So I was thrilled when I read about the study.

My neuro all along was ok with it because he said there really wasn't data or an argument that would demand daily injections. I see him next week and will talk about the study with him and see if he has any other comments worth passing on.

lunarrays · Post by **lunarrays** » Thu Apr 16, 2009 7:31 am

ursula - if you are talking about a link to the copaxone stdy, it's in my first post here.

arcee - if would be good to hear what you doc has to say about it.

if it really works as well every other day, then why would anyone want to go through the torture daily. it'a an automatic 50% improvemt in the quality of life in that respect.

Arcee · Post by **Arcee** » Wed Apr 22, 2009 8:12 am

So here's my little report from my neuro appt. He thought the every other day study was interesting and made sense. Seemed like he thought the researchers were credible albeit the sample size small. He wasn't surprised by the findings, and has a vague memory that someone once tested it at a 1x/week dosage and that dosage did not hold up in comparison. So we left it that I will continue to do every other day. I think we both wish there were more data available, but given what we know and what my body can tolerate, it seems like a reasonable, and, we hope, beneficial, approach.

best of luck with what you choose...

Needled · Post by **Needled** » Wed Apr 22, 2009 10:32 am

Arcee, Thanks for reporting back. Glad your appointment went well and you're sticking with every other day. I only hope my neuro is as agreeable. If he's not, I may do it anyway. And then as another year goes by, hopefully a pill will be available so it will all be moot!! But for now, off to do my shot for the day.

N

lunarrays · Post by **lunarrays** » Fri Apr 24, 2009 11:34 am

Arcee, good for you and thanks for the update.

Sometimes (should be everytime) we need to take control of our own health, no doctor in the world knows you better than you know yourself. After spending nearly a year in FTY720 study and finally opting out due to it not having any impact on my MS, I am about to start Copaxone and will go with alternating day injections. Hope this crap works:)

chrishasms · Post by **chrishasms** » Fri Apr 24, 2009 4:02 pm

I do because I forget to take it. My MRI's look great.

Ptwo · Post by **Ptwo** » Mon May 04, 2009 1:59 am

I started with every day copax for 3 years then went to every other day for the next 4 1/2. At that point my annual mri showed a crop of new lesions. (this was also during a very stressful period when it looked like my wife had ovarian cancer)

Back on every day for the last 6 months and just completed a follow up mri. No new lesions and some repair going on to the ones that showed up last time.

Will I go back to every other day? Maybe, time will tell.

Needled · Post by **Needled** » Tue Jun 09, 2009 10:13 am

I met w/my neuro and asked about options for cutting back because of the lipoatrophy. I told him it wasn’t about vanity and please don’t tell me to rotate the shots because I’m obsessive about that, but I’m worried about running out of areas. I’m not at that point yet, but I can see it getting there in a year, give or take. This led to a whole other discussion about the pills that will hopefully be available by that time, but that’s another story. I showed him the study on every-other-day injections. He wasn’t impressed. Said it was old, small, wasn’t produced by Teva and just didn’t have enough data for him to make a decision. I told him I needed to do something to give my skin a break, and I saw my options as either stopping for a month or two, or going every other day for that same time. After much discussion, he admitted that every other day was the lesser of two evils, if I was determined to do something. So he wasn’t happy about it and certainly didn’t give his blessing, but at least he knows what I’m planning on doing if I get to that point.

Arcee · Post by **Arcee** » Wed Jun 10, 2009 5:31 am

Just wondering why the study not being produced by Teva is a strike against it? Lots of arguments out there that you want someone other than the manufacturer to produce the studies.
Regardless, I hope you get some relief from injecting while being comfortable with your new routine.