Copaxone - daily vs. every other day???

A board to discuss the Multiple Sclerosis modifying drug Copaxone

Postby Needled » Wed Jun 10, 2009 9:20 am

Arcee, I agree with you -- it doesn't make sense to me, either. He did say he would check around and see if he could find anything else on it. The end result, though, is when I feel I need to do every other day, I will. But I'm glad I asked about it and he knows where I'm at.
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Postby LaGringa » Sat Apr 10, 2010 4:14 pm

Hello

I read all of your responses and i just started on Copaxone Monday (April 5ht) and the medication made me feel faint, dizzy and very fatigued. I know that i have only been on it for a few days but after almost fainting on day 2 i decided that it was too much for my body (pretty thin, 5' 7'' and 115 lbs.) to tolerate and i now take it every other day. Did anyone else experience these symptoms when they first started using Copaxone? If so did anyone start taking it every other day and after the change did the symptoms go away? If anyone else has experienced anything similar, how long did it take your body to be able to tolerate the medicine? Thanks!
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Postby Absentee » Sun Apr 11, 2010 5:40 pm

LaGringa wrote:Hello

I read all of your responses and i just started on Copaxone Monday (April 5ht) and the medication made me feel faint, dizzy and very fatigued. I know that i have only been on it for a few days but after almost fainting on day 2 i decided that it was too much for my body (pretty thin, 5' 7'' and 115 lbs.) to tolerate and i now take it every other day. Did anyone else experience these symptoms when they first started using Copaxone? If so did anyone start taking it every other day and after the change did the symptoms go away? If anyone else has experienced anything similar, how long did it take your body to be able to tolerate the medicine? Thanks!


I can say that I did not feel well the first week or two I took Copax. I got intense body shaking chills, lightheaded, "nervous" feeling - all on various occasions with varying intensity. I was and still am convinced that it was a stress response and my body getting used to the medicine. The stress was certainly the shots and the implications of a future full of injections.

After that initial period, I relaxed and my body got used to the drug. And now 1.5 years later there is not one issue.

Now, I can't say you should stick to it, but I do think that it is hard to know anything after such a short period of time. Also, I would at least let your doc know you have scaled back the regimen.

Best of luck.
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Postby dignan » Sat Apr 17, 2010 9:27 am

This study was presented at the AAN meeting: Copaxone twice weekly. The results showed no difference between daily and twice weekly.


Twice Weekly Versus Daily Glatiramer Acetate: Results of a Randomized, Rater-Blinded Prospective Clinical Trial Clinical and MRI Study in Relapsing-Remitting MS

Christina Caon, Jai Perumal, Alexandros Tselis, Wendy Ching, Fen Bao, Zahid Latif, Imad Zak, Omar Khan, Detroit, MI

OBJECTIVE: To investigate in a small pilot study the safety, tolerability, and efficacy of glatiramer acetate (GA) 20 mg injected subcutaneously (SC) twice a week versus GA administered 20 mg SC daily in RRMS.

BACKGROUND: The optimal dose of GA in RRMS remains unknown. We have previously shown that GA administered on alternate days appears to be as effective as daily GA. There is considerable interest in identifying the optimal dose of GA in RRMS.

DESIGN/METHODS: We conducted a prospective, randomized, rater-blinded 2 year study to compare GA 20 mg SC twice a week to GA 20 mg SC daily. RRMS patients receiving GA 20 mg SC daily for at least one year were randomized to either continue in the same fashion or switch to GA 20 mg SC twice weekly. EDSS were recorded every 6 months and to confirm relapses, while brain MRI scans were done at baseline and month 24.

RESULTS: 48 RRMS were randomized into equal groups of GA 20 mg SC daily or GA 20 mg SC twice-weekly. Both groups were well-matched. After two years, the annualized relapse rate, mean EDSS, proportion of relapse-free patients, and the proportion of patients without disease progression were similar in the two groups. Brain MRI also did not demonstrate any significant changes in T2W or T1W lesion, or in the percentage brain volume change. However, the incidence of lipoatrophy, local injection site reactions, and immediate-post injection systemic reactions were significantly lower in the GA twice-weekly group.

CONCLUSIONS/RELEVANCE: This study provides further evidence that GA administered less frequently than daily may be as efficacious and better tolerated than GA administered daily. This may have a significant impact in the clinical use of GA. Larger, multi-center studies are warranted to confirm our findings and investigate the optimal dose of GA in RRMS.

http://www.abstracts2view.com/aan/view. ... 0L_S11.002
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Postby Needled » Sat Apr 17, 2010 9:44 am

Thanks Dignan. I saw this yesterday with your other abstracts and wanted to ask -- Do you know what the original Copaxone dosing was during the FDA trial? I'm just guessing but they did they use daily doses of different amounts, like 20, 40 and 60? I can't believe 20 years later they still don't know what the optimal dose is...
I think it was last year or so Teva trialed the daily 40mg dose but discontinued it because there was no difference (if I remember right).
Thanks for keeping us up to date. It's very much appreciated!
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Postby patientx » Sat Apr 17, 2010 1:23 pm

Needled wrote:Thanks Dignan. I saw this yesterday with your other abstracts and wanted to ask -- Do you know what the original Copaxone dosing was during the FDA trial? I'm just guessing but they did they use daily doses of different amounts, like 20, 40 and 60? I can't believe 20 years later they still don't know what the optimal dose is...
I think it was last year or so Teva trialed the daily 40mg dose but discontinued it because there was no difference (if I remember right).
Thanks for keeping us up to date. It's very much appreciated!


They only used 20 mg/day for the original trial (at least the phase III).

http://www.ncbi.nlm.nih.gov/pubmed/7617181

At one time, I had the entire paper - I'll have to see if I can dig it up.
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Postby Needled » Sat Apr 17, 2010 2:02 pm

Thanks PX. Now I'm really curious about the dosing. Since I was so wrong with my original thought, I shouldn't say anything else. It's just that I assumed (yeah, I know what they say about that) at some point along the line they had tried other doses and/or dosing schedules, at least in the earlier phases.
BTW, I'm still hanging in there and doing my shot every day. I bet I've missed less than 10 shots in four years. Pretty proud of myself for a girl who hates needles. :lol:
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Postby patientx » Sun Apr 18, 2010 2:47 pm

Needled wrote:Thanks PX. Now I'm really curious about the dosing. Since I was so wrong with my original thought, I shouldn't say anything else. It's just that I assumed (yeah, I know what they say about that) at some point along the line they had tried other doses and/or dosing schedules, at least in the earlier phases.
BTW, I'm still hanging in there and doing my shot every day. I bet I've missed less than 10 shots in four years. Pretty proud of myself for a girl who hates needles. :lol:

You got me curious, too, so I ran up to the library and checked out "Curing MS," by Howard Weiner, M.D. It has a chapter on the development of Copaxone, as well as some of the other drugs, like the interferons. Though I have some qualms with the book, it's a pretty good.

Anyway, here are some relevant passages from the book. Google Books is missing many of these pages, so I'll have to type them in by hand - any typos are mine.

The first clinical trial of Cop-1 was conducted in Israel at the Hebrew University Hadassah Medical School.... Four MS patients in the terminal stages of the disease and three patients with a form of allergic encephalitis were treated. They were given 2-3 mg of Cop-1 two to three times a week for four to six months. No beneficial effects were observed, but most important, there were no side effects. Arnon then searched for other MS clinicians to test Cop-1 in MS patients....

Arnon was able to interest Helmut Bauer, a German neurologist... Dosing was a big issue and was discussed at a MS scientific meeting held in Gottingen, Germany, in 1980. Bauer was in the midst of an open-label trial in which ten patients with mild disease received a daily dose of 2mg of Cop-1 for a month, and eleven with more severe disease were given a higher dose of 20 mg.... Bauer's most important results were that he observed no toxicity when a higher 20 mg dose was given.

The breakthrough clinical trial for Cop-1 was conducted in the United States by Murray Bornstein.... He began by injecting patients with 5 mg per day of Cop-1 for five days, with the plan to decrease the frequency of injections to once per week, but he ended up increasing the dose to a daily injection of 20 mg based on his clinical impression that patients needed continued treatment... what was most important is that he had established a dose (20 mg per day)....

Next came the big step of carrying out a double-blind, randomized, placebo-controlled trial.... the dose was 20 mg per day...


It looks like further trials used this 20 mg dose, but the book also mentions a trial with progressive patients using a daily 30 mg dose (the results weren't positive). So, I guess the establishment of the dosing was like most things - trial and error. My guess is that it's no accident that the 20 mg is a nice factor of 10 times the earlier dose used. As an aside, when I first started injections, my sister(a nurse) saw the syringe, and remarked, "boy that's a lot of medicine."

By the way, congratulations on sticking with the injections. I think they would mark you down as "excellent" in the compliance column.
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Postby Needled » Tue Apr 20, 2010 10:13 am

Wow! Thanks very much for digging this up. Very interesting... Trial and error, indeed. It sounds more like throwing a dart, seeing where it sticks and not bothering to move it. A very scientific method of figuring out the dosing. :roll:
And although I may be one of their more compliant patients (only in terms of doing the shots), I bet I'm also one who hates it more than most. But ya gotta do what ya gotta do.
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Postby DizzyDean » Fri Jun 18, 2010 4:13 pm

I have been on daily copaxone for 3 yrs now. I was perhaps missing around 2-3 shots per month during this time. During my time on copaxone I have had no relapses; I don't have any disability or frankly - even any symptoms.

My neuro has agreed to have me try doing copaxone every other day for this - my 4th - year. I suspect he'll want to do an MRI after that year and compare to the baseline 2 yrs ago at the end of the first year of copaxone. He says he has other patients who do the every other day protocol and it seems to have worked OK for them.

Ideally, I guess I'd have an MRI now and then one in another year to see the results of every other day. Guess I'm trying to design a clinical trial with myself as the only patient.

And, what happens if I have a relapse in the coming year...back to every day, or was I "due" anyway... things to ponder.
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Postby harpgirl » Sat Jul 17, 2010 8:42 pm

I faithfully injected every day for eight years. Did great, but then started having some issued I just couldn't live with (had to fight against it.) I started on LDN and feeling and doing better while still taking Copaxone.

So, now I forget to take my shot, and probably take my shot twice a week. Really haven't been faithful to my shots for the last year. Of course when I am doing bad, I make sure I take my shot every day, then feel better and back off.

Guess I should work on the consistency and try for every other day. Right now, not sure I need it with the other things I do. But too scared to give it up completely.
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Postby MSmama » Wed Jul 28, 2010 1:50 am

I took Copaxone everyday for a year until April 2010. Then i had my veins scanned and found a left jugular stenosis which was consequently treated.
It has made me Q everything I had thought, everything I had been told and the knowledge base on which current drugs have been developed.
This has made the welts and lipotrophy unacceptable.Then there is the nagging concerns of why I have developed thrombocytopenia and strange squeaking bones so I have dropped back to two or three times a week depending on how I feel.

Everything is going well- no negative change. Looking forward to next blood test and MRI.
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