New to MS, new here too...Copaxone every other day?

A board to discuss the Multiple Sclerosis modifying drug Copaxone

New to MS, new here too...Copaxone every other day?

Postby SageGirl33 » Sat Sep 29, 2012 10:43 am

Hi everyone,

I was just diagnosed a few days ago after a few months of my first flare. Nasty business this MS. Dizzy, numb...really thought I was losing my mind after 2 months of it. Until the MRI. They found 5 lovely lesions in there and 2 older ones, whatever that means. Tons of tests later here I am. I chose Copaxone to start after they do the 3 days of IV steroids next week to stop the insanity in my head. (Its funny actually, I get to tell people all of this really is in my head, haha). Anyway, getting off topic, bear with me please.

I know someone who has been diagnosed with MS for 11 years, and her reasons were the same as mine for Copaxone being the only real choice to start treatment with. I have a young child in school and cant tolerate not being able to fight infections, or the flu symptoms that come with the other meds. I work full time so with something like Avonex I would have to take it Friday and the thought of destroying my family time every week from now until the end of time was just too depressing. Copaxone here I come.

That said, I have been reading alot about the lipo-whatever thing that happens. I dont want that if possible. What are some techniques that you have used to minimize site issues? I'm 33 years old by the way and in pretty good shape other than this diagnosis. I hate needles. Thankfully I love life more than I hate them. She said that she used to do it every other day instead of every day and the effectiveness was only decreased by 1% or something silly like that. Less injections, same benefit...thoughts? Of course the Neuro wouldn't agree to this or the pharm company. But I'm not asking them...just you.

I would appreciate any advise that anyone could give. Thank you and have a blessed day. :-D
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Re: New to MS, new here too...Copaxone every other day?

Postby sophie447 » Sat Sep 29, 2012 2:50 pm

Hello Sagegirl,

I have like you chosen Copaxone. Been on it 9 weeks. Could'nt think of dealing with flulike symptoms every so often, so the interferons were definitely not my first choice. I enjoy life too much, am too active and hope to keep it that way as long as possible. Also, the depression side effect scared me, I think MS is depressing enough! Injecting is not so bad after you take the time to adjust to it. I found that manual injections are way better altough hard to do the first few times.

That being said, I am also thinking very seriouslly about taking it every other day. My Neuro did not agree to that, his feeling was that 5 out of 7 days after six months at full dose would be reasonable. Despite that advice, I decided to take only 6 of 7 days for now. I give my arms a break every other week that way.

I am also very concerned with lipoatrophy, so I am very fussy about where I inject. In order to make sure I don't use the same site too often, I keep color coded real size maps of injections site in all 7 zones on my body!! That way, I see where I have injected, and precisely where the past 3 injections were. I hope it will help prevent the dents from appearing. It might make me sound like a nut, but that way I know I will have tried my best.

When reading on this med I found abstracts for 2 studies by Fletcher on EOD dosage. They look OK, altough small studies. If you google Copaxone and Fletcher you will find them. They seem to indicate that EOD is just as effective as ED. I asked Shared Solutions about that and of course they replied that they do not have an opinion and that is just not what is supposed to be done. However, they do admit that the EOD pattern is very common amongst users.

If you search through past posts, you will find that quite a few here are taking that reduced dosage. In a nutshell, I think I will go to EOD or 4 times a week soon. Certainly won't last 6 months.

I have to mention that my MS is not very active. I don't want to influence you in any way, just tought I would share my toughts.

Best of luck to you.
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Re: New to MS, new here too...Copaxone every other day?

Postby sophie447 » Sat Sep 29, 2012 2:56 pm

Forgot to mention, it is hard to be really motivated in taking a drug that at best, will reduce relapses by 30 % and have virtually no effect on progression of the disease in the long term.

Take care. :-D
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Re: New to MS, new here too...Copaxone every other day?

Postby SageGirl33 » Sat Sep 29, 2012 4:01 pm

Hi Sophie, thank you so much for responding. That's my daughters name by the way. :-D

I agree on everything you said and I will look into this mapping thing. I have seen other posts where people do that and do a journal to keep track. I think this is a great plan especially since I'm so forgetful. I don't think I can blame that on the MS but my boyfriend thinks its funny that I try to, lol.

Before a few weeks ago I didn't know I had MS so I don't know how active mine is because I have no way to judge that. Maybe someone could tell me if it's bad or not. I've had severe symptoms (severe to me, who has never had them before), but not severe enough that I couldn't function at work for the most part. I don't think I've had any other flares but there were older lesions on my brain too so who knows. What do you mean about your MS not being that active?

It is a bit depressing to take a drug daily that will not stop the progression of the disease. And that no one can even be sure what kind of progression you'll have. I find that I am both scared and determined at the same time. I've been an organic, whole food eater my entire life so not much to change with my diet but I will be much more aware from now on about fat intake, etc. I will make time to get back into yoga (but my hot yoga is no more apparently, which is also sad), and just do my best to take care of the things that I do have control over.

I think I will run the EOD by my Neuro at my next appointment in a month but ultimately it is my choice. Once this steroid IV is done next week maybe I'll feel a lot better.

Oh, I've heard a lot of controversy on cold/ hot before and after injection to minimize site problems. Do you do that? Warm before, ice after, etc? I start the injections in a few days and I've never had to do anything like this before. I just want to do it right with minimal damage. Thank you again for taking the time to get back to me, it's so much appreciated. My world kind've flipped around a few days ago but at least I now know the face of the beast I'm battling. The enemy is targeted so to speak. :-D Take care and have a great night.
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Re: New to MS, new here too...Copaxone every other day?

Postby sophie447 » Sun Sep 30, 2012 5:06 am

Hi again.

I am not very knowledgeable about MS. I was diagnosed 2 years ago with 'probable' MS. I have only suffered one initial attack and no relapse since then. I decided in a rush to start Copaxone after an MRI that showed 2 new lesions on my brain in the beginning of the summer. I figured then that if I could deal with taking a med that was tolerable and would not 'poison' my existence, I might as well take it and hope it will help some.

The drug BG 12 that should be out in a few months and my neuro thinks it is superior to Copaxone on top of being oral. I am just waiting for it on Copaxone. For now, Copaxone fells like the least of the evils.

You have the right outlook, wanting to do it right with minimal damage. The hot or warm before is supposed to help. For that reason, I do my injection right our of the shower in the morning. Also, it prevents me from dreading it all day. In the beginning, I swear, I was thnking about it 30 hours out of 24 each day! :cry: After a few weeks, I would think about it going to bed and if I woke up during the night. Now, I think about it when I wake up, do it and get it over with. You will adjust too and it will eventually become just another little thing in your life.

I do cold if it is especially sore afterwards. Most often I don't bother.

I have written it before, the hardest part in taking a drug like that, is the daily reminder of the disease. Instead of putting it out of my mind, I have to do something that is a little complicated and unpleasant to remind me of the presence of a disease that migh evolve cripple lme one day. That is definitely the worst part.

Lots of people on this board do not take DMD's and-or have adopted other regimens, most often including nutrition, that they beleive helps in dealing with MS. You will find lots of great information there.

I wish you the best in adjusting to this new reality in your life. With a positive attitude, a bit of humor and also some effort sometimes, it is most often bearable.
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Re: New to MS, new here too...Copaxone every other day?

Postby patticake66 » Sun Sep 30, 2012 5:38 am

I was diagnosed in March of 09 with numbness in both legs. MRI showed 3 lesions on brain and spine. I started Copaxone 2 months afterward and haven't had a flare up since. That really doesn't matter since every person who gets MS gets it differently and at a different rate. And no one can tell how your MS will progress so doing whatever you can to slow it down makes the most sense. Anyway, I found that injecting in my stomach (which has the most fat on my body) does not leave lipotrophic dents. I also inject into my waist area and buttocks. I am fairly thin so I chose the areas with the most fat and areas in which I know the fat will always come back to. My thighs and arms are normal size but watch out for those areas because they will dent on you...permanently. My neuro is one of the best in the country....she recommended Copaxone every other day. She has back up science research, because she is apart of it, that shows the effectiveness is the same every other day vs. every day when taking Copaxone. BG-12 is close by...I can't wait. You will probably be on Copaxone a few months anyway. Good Luck!
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Re: New to MS, new here too...Copaxone every other day?

Postby SageGirl33 » Sun Sep 30, 2012 7:15 am

Thank you so much Sophie and Patti, I really appreciate the tips. I will keep an eye out for this BG 12 that you've mentioned. Certainly if I don't have to stick needles in me and the same non side effects / effectiveness of Copaxone then I will do that. I really appreciate you telling me about your Neuro too Patti, in that its okay to go every other day. I had pretty much made up my mind about that because I really don't like the idea of daily injections and craters everywhere. Hopefully the injections won't have to be long term with all the advancements in the drugs coming out. Wouldn't that be lovely? :-D

It's a daily reminder Sophie, that's true. I still don't know that everything has hit me yet but again, I've felt so crappy the last few months that I'm just thankful that there's some light at the end of the tunnel. Even if it comes in the form of steroids and DMD's. You know all the blood tests they run? One of them is for syphilis, which is curable. When I was in the Neuro's room being told it was definite MS I sighed and said, "crap, I was really hoping it was syphilis". Haha.

All joking aside, the diagnosis is scary and I wish that last Thursday was a bad dream. It's not, so I'll just do what I've always done when faced with things I can't change. Accept them and do my best to move forward with a good attitude. Easier said than done on bad days mind you, but I try. And I'm sure I'll come here a lot to see how everyone else is managing. It feels good to know there's a place where there are real people dealing with the same stuff, not the doctors or pharm companies, just normal people like me.

I will leave my arms alone for now and see how it goes alternating on the places I can hide from view. As for when I'll do it, I don't have any idea but a schedule will present itself I'm sure. This is a great place to learn and I'm so glad I found it. Thank you both for taking the time to respond, it's really appreciated. Have a great Sunday. :smile:
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