INJECTING COPAXONE EVERY OTHER DAY...

2gentle

HI ALL!
HOPE EVERYONE IS WELL...RECENTLY, I ASKED SHARED SOLUTIONS IF THERE WAS ANY DIFFERENCE IN THE EFFICACY OF COPAXONE, IF IT WAS INJECTED EVERY OTHER DAY, AS COMPARED TO EVERY DAY...

I RECEIVED A PHONE CALL, AND THEN A FAX TELLING ME THERE WAS NO DIFFERENCE! NEEDLESS TO SAY, I WAS SHOCKED, BUT NOT SURPRISED...

I ALSO RECEIVED ANOTHER LETTER FROM TEVA(MAKERS OF COPAXONE,LOL, IN CASE U DIDN'T KNOW), WHICH SAID THAT EVEN THOUGH STUDIES HAD BEEN DONE SHOWING NO DIFFERENCE, IT WAS STILL TEVA'S POSITION THAT IT BE INJECTED EVERY DAY....

I NOW DO EVERY OTHER DAY, AND I FEEL BETTER AND SO DOES MY SKIN! LOL....I WOULD LIKE SOME OTHER THOUGHTS ON THIS PLEASE...I ALSO INTEND TO TAKE THE LETTERS W/ME TO MY NEURO APP'T IN MAY, AND SHOW THEM TO HER...

SO ANY THOUGHTS ON THIS??
THANKS ALL, AND BE WELL!
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Every journey begins with a single step...Diane

Ptwo · Family Member Joined: Dec 29, 2003 Posts: 73

Diane, I just decided to go every other starting about a week ago. I've read the studies many times over the last couple years and finally decided to give it a go.

The second study from 2002 even shows slightly better results for the mis-a-day method. The studies were very small so it's hard to say how accurate they are but at least for awhile it will be nice to be less of a pin cushion.

Good luck with it, Peter

2gentle

Peter,
Hi and thanks for the reply Exclamation

I'm sure when Teva was doing the trial for Copaxone, they tried the every other day method too,(or at least, I "hope" they did,lol), but so far, I haven't been able to find anything on it Confused

...

I *do* like the fact that these studies were done over a 2 yr period,and still had good results Very Happy

.

Here's hoping the week is a good one for you, and thanks again!
_________________
Every journey begins with a single step...Diane

Ptwo · Family Member Joined: Dec 29, 2003 Posts: 73

Diane, I've never seen any info on every other day copax in the early studies. I think they just took a guess at what would work and stuck with it. Look at Rebif and Avonex, both the same interferon just different dosing. Why did the Avonex folks go with the once a week when it now looks like the every other day of Rebif is more effective?

Did you happen to see the story a couple months ago about the researchers who think copaxone may be more effective if given just once a month or maybe once every 3 months? They even said just one shot for a person with ms would be effective. (or so they thought)

So far so good, Peter

Arron · Posted: Mon May 03, 2004 12:17 am Post subject:

can one of you send me the studies you are referencing? Either a URL or an e-mail/fax would be greatly appreciated. Please PM me if you could fax it.

thanks in advance

Ptwo · Family Member Joined: Dec 29, 2003 Posts: 73

Arron, Here's a link to one of the studies, http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11997066&dopt=Abstract

I'm having a problem finding the other, I think it was from 1999 and the researcher was named Anderson (I think)

Peter

seahorse · Posted: Mon Jun 21, 2004 1:10 pm Post subject:

hello,

since i use cop, too, i am very surprised on the topic of this thread. have you ever discussed that subject with your neurologists? injecting just every other day would be soooo great for me, because i often really don't know where to put the needle in - everywhere these massive knobs (i dont know if thats the right word for the stuff you get after the injection, english is not my native language).

if injecting every other day will do the job just as fine as an every-day injection does, i won't torture myself so much anymore Confused

have a nice day, antje
_________________
"Anything essential is invisible to the eye.” Antoine de Saint Exupery, The Little Prince

Arron · Posted: Mon Jun 21, 2004 3:21 pm Post subject:

Antje, we are in the process of gathering all the information about every-other-day injections and will be publishing it very soon...

gentle2 · Guest

Hi there!
You did just fine with your English! Now with that being said, I will tell you that I received a fax and a phone call from Teva, telling me of 2 studies done on every other day dosing....the results of the trials were better w/ the every other day dosing, but they (Teva) received approval from the FDA for EVERY day dosing.

I took one of the letters to my neuro, and we discussed it...She said that protocol says she has to follow Teva's recommendation of every day, but personally, she would have no problems w/ doing the injections every other day. So that's how I do them....I have to admit I feel better this way, also, since it gives my sites some time to "breath",lol. My MRI's are good-no new lesions, so I'm sticking to every other day injections.

What I've written is only my perspective...by that I mean, I'm NOT telling or suggesting someone go to every other day injections, just telling all that "I" do, with my neuro's blessing.

I would strongly advise anyone considering this, to talk it over w/their neuro first, and follow their advice.

Be well, and I hope this has helped.

marie · Guest

I have been on copaxone since it came out, about 8 years. At that time I could hike and walk and jog. I now have some trouble walking and I stumble quite a bit, but I have to say that my MRI's are incredible.

I have no atrophy, no black holes and only the same 3 lesions I originally had. I have no lesions at all in my spine, after 14 years with MS. The injection heart palpitations and stuff never happen to me, but I always get itchy lumps. I also have now got indented areas where I put my shots most often, and you can feel a kind of hardish area under the skin.

I am most interested in the every other day regimen, and am grateful to find this site. I find it odd that the company who did the research which showed a slightly better result with every other day dosing applied to the FDA with every day dosing. Why would they do that? I could speculate that money is the reason, but don't know it for sure.
The study I saw on NIH website comparing cop daily, cop every other day, and interferon was really too small to count since the numbers in each group was below 30. If the other study is equally small, then that is the reason. It takes a cohort of 30 to reach any significance in terms of findings because the small number makes it possible for the group you picked to be unique in some way.

This can be understood best if you think of a cohort of 2, one gets treatment and one not. Obviously, no matter how well matched the two are, any findings you have are going to be affected by the unique biology of each. If one gets the flu during your study, what does that do to your numbers? This effect is reduced every time you increase the number of people in your study. The ultimate would be if we treated every single MSer with something and compared them to themsleves as a control group (ie treat for 1 year and not treat for 1 year, blinded and placebo controlled). The numbers you got in such a study would be perfect reflection of efficacy.

You might have noticed that the study on cop and SPMS showed a trend towards improvement but the unexpectedly small number of progression overall made the findings unfortunately insignificant. In other words, the placebo group just did not progress as expected (according to data from other studies on SPMS) so when comparing the cop treated group to them there was no real difference. So study size is a real problem for researchers.

What I want to know is how big were the studies that Teva sent you? This means everything in terms of whether or not it is a good plan for all of us. Man! I want it to be...
Marie

seahorse · Posted: Thu Jun 24, 2004 2:29 pm Post subject: cop story...

hello everybody,

that sounds so great to me, injection every other day. i think i will also discuss that with my neuro, although I don't believe he's aware of this study. I think I will translate it for him Smile

I'm really unhappy with these reaction on the injection side, every day this request for a "free" place around my hips or belly.... would be a real relief to skip one day Laughing

I had this reaction that you call SPIR once, that was really frightening for me. I thought "no panic, will be over soon". But how can you avoid panicking, when you can't breethe properly and can't move and just lay around with a feeling like having a big stone on your breast? After about 15 min (what felt like 2 h for me), I had to vomit like crazy, and then I was shaking for the rest of the night. What an unpleasent experience! Mad

Ok, thats maybe enough of this story for today...
It would be nice if anyone could leave here a link on this Teva-study, if possible! Thanks in advance!

Have a nice time, Antje.
_________________
"Anything essential is invisible to the eye.” Antoine de Saint Exupery, The Little Prince

Arron · Posted: Thu Jun 24, 2004 2:55 pm Post subject:

we will put it up for download tonight...

seahorse · Posted: Thu Jun 24, 2004 3:07 pm Post subject:

Aaron, thanks very much in advance! I'm really curious what my neuro will say Laughing

But my health insurance company will be surely delighted if they'll have to pay the half for me.

Oh, its getting really stormy here in Germany right now, seems like a very blustery night. I better go to bed now Laughing

See you soon, Antje.
_________________
"Anything essential is invisible to the eye.” Antoine de Saint Exupery, The Little Prince

Arron · Posted: Fri Jun 25, 2004 1:29 am Post subject:

The Copaxone every other day article is now available:

http://www.thisisms.com/article-125--0-0.html

seahorse · Posted: Fri Jun 25, 2004 2:08 am Post subject:

Aaron, thank you very much for this quick reply.

Really, really good work done! So I can cite this to my neuro, and additionally, I know now that you call this stuff at the injection site "dents" in englisch. In german, I would say "Knubbel", but thats not very scientific Laughing

So thanks again and have a nice day! Antje
_________________
"Anything essential is invisible to the eye.” Antoine de Saint Exupery, The Little Prince