Anybody here with SPMS for 10+ years who is on Copaxone?

A board to discuss the Multiple Sclerosis modifying drug Copaxone

Anybody here with SPMS for 10+ years who is on Copaxone?

Postby agate » Thu Jan 18, 2007 5:47 pm

Hi Copaxonites or Copaxonians!

I'm new here, and I have a question. Is anyone around who is on Copaxone and who has SPMS? Better yet--anyone who's had SPMS for more than 10 years and is on Copaxone?

I'd really like to know how you're doing. My neuro thinks it's best for everyone with MS to be on one of the ABCRs, but I've hesitated to start Copaxone after a not-very-good experience with Avonex.

I've had MS since about 1978 (diagnosed 1980), and it's SPMS.
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Postby becca » Fri Jan 19, 2007 6:11 am

funny how doctors are different all mine said was i wish there was something i could do for you. 14 years spms.
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Postby agate » Fri Jan 19, 2007 8:56 am

Hi becca,
Thanks for answering! My neuro did say that "some neurologists" wouldn't agree with his approach.

I'm inclined to agree with your neuro, but luckily my neuro is willing to let me disagree with him. He isn't showing me the door yet, anyway.
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Postby agate » Tue May 22, 2007 5:37 pm

An update on this post.

I was summoned into my PCP because I hadn't been to see her for over a year, and while I was seeing her, she once again urged Copaxone for me. Since she is a very good doctor (IMO) and since she's suggested Copaxone 3 times now (not pressuring, just gently recommending), I felt persuaded to give it a try.

So FedEx has been delivering all sorts of goodies--informational DVD, a grand notebook, and a nifty shoulder bag with a ballpoint pen. (Teva Neuroscience is really trying, I'd say!)

I've read the posts here about Copaxone and might just chicken out, but I hope I don't since I've gone this far.

Has anyone ever passed out with Copaxone? This is one of my main concerns since I live alone.
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Postby Shayk » Tue May 22, 2007 7:05 pm

Hi Agate

I've been on Copaxone about 7 months and so far I haven't passed out.

Since you're concerned, you might want to think about having your PCP prescribe an Epi Pen so that you'd have it on hand "just in case". Hopefully you'll never need it.

Take care and I hope it goes well for you.

Sharon
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Postby connieb » Tue May 22, 2007 9:34 pm

If I lived alone, I'd make the same choice you did, since I wouldn't want to be potentially incapacitated with flue-like symptoms for a day or so each week. I personally chose Copaxone because of its favourable side-effect profile. Also, systemic allergic reactions are supposed to be very very rare with Copaxone and post-injection reactions although very scary are very rare and supposed to subside within fifteen minutes or so. So far, no passing out or any other scary stuff for me, just some bruises, lumps and bumps and I'd say more muscle aches and joint pains than before I started on it, but who knows whether it's the drug or MS.

I was completely freaked out at the beginning-- I can't tell you how much I hated all the promotional stuff they sent me-- it was a constant, unwanted reminder of this freakish illness I never ever in my wildest dreams thought I'd have to deal with. I thought that even if some kind of a weird side-effect doesn't get me, an anxiety attack will!

Everyone is different, but I personally turned a corner when I ditched their autoinject-- not having to set up a field hospital in my bathroom with all the paraphernalia they give you was for me a huge improvement, also my site reactions got much better with manual injecting. It's a thin needle and only goes under your skin-- I also took B-12 injections for while (those go in your muscle) and found them sooo much more traumatic than injecting sub-Q! I'm at the point where injecting is really and truly not a big deal at all-- a pain in the buttocks (no pun intended!) chore but not something I ever dread. Time also helped-- for lots of people, the longer you do it the more your body gets used to it, so it reacts less. So don't chicken out-- I'm sure you've been through a lot worse and this is not very likely to hurt you and it just might help! Best of luck to you!
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Re: Anybody here with SPMS for 10+ years who is on Copaxone?

Postby NHE » Wed May 23, 2007 3:22 am

agate wrote:I'd really like to know how you're doing. My neuro thinks it's best for everyone with MS to be on one of the ABCRs, but I've hesitated to start Copaxone after a not-very-good experience with Avonex.

I've had MS since about 1978 (diagnosed 1980), and it's SPMS.

Before going on Copaxone, you may wish to read through a thread on the alt.support.mult-sclerosis news group. The posts in this thread discuss negative injection site reactions that some folks have experienced with Copaxone.

NHE
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Postby agate » Wed May 23, 2007 2:19 pm

shayk (Sharon), thanks so much for the encouraging information from your experiences. Funny that you mentioned the EpiPen because when I asked Shared Solutions about the possibility of an anaphylactic shock reaction or some such, they said that the Copaxone reaction some people have isn't really anaphylactic shock, and then they said, "It's not something you'd need an EpiPen for." She (it was a woman I spoke with) indicated that it was "just" a matter of waiting for about 15 minutes for the reaction to go away.

However, since you mentioned an EpiPen, I'm going to look into it. Thanks for the suggestion!

connieb, I really appreciate your information, too. I can understand how you might have hated all of the promotional material about Copaxone--even though I have a somewhat different perspective. When I was first diagnosed (1980) and for years and years afterward, nobody took the slightest interest in my MS. But with Avonex and now Copaxone showering me with attention, it's really extraordinary that anyone cares. I still can't get over the novelty of it.

I'm glad to know that the autoject isn't as easy to use for some people as the manual injection because when I read about the autoject, it sounded fairly complicated--and I'm used to manually injecting Avonex. I'd like to see where that needle is going.

I asked the Shared Solutions people to send supplies so that I'd be able to do the shot either way.

NHE, thanks for the link to the newsgroup--reading the posts there was very helpful. Some of the injection site reactions sound bad, but of course there's no way of knowing the whole story....

It must be hard to keep track of all of those injection site rotations--there are about 17 possible sites on the abdomen alone.



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Postby vk » Wed Aug 22, 2007 10:09 am

Have been away from forum for awhile, but, I have been taking copaxone for 2 years, now. I went off for awhile because of heart problems from novantrone. They wern't sure which drug was the cause. I do the injections every other day. I started out every day, but, retained water which led to heart problems. We did notice a definite improvement at that time, but, I can't tolerate the shots every day. The cardiologists say it is easier to repair the heart muscle than stop the progression of ms. My neuro fought hard for the copaxone, because it is not 'approved' for spms. I use the auto-inject, because I have very little use of my left hand. The side-effects are minimul compared to all the others, so, hope you have a good experiance. VK
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