Copaxone side effects

Alicia · Family Member Joined: Jun 30, 2004 Posts: 49 Location: USA

I have a question for anyone that would like to respond. I have had MS for the past 5 years 3 of which I have been taking Copaxone. I was okay for the first six months and then I started having the severe reaction with chest tightness and shortness of breath. This reaction has happened to me at least once every 2-3 months while I have been on this drug. Now my chest aches on and off all the time. I also have had substantial hair loss since starting this drug. I have talked with my doctor about these things and he really cannot confirm or deny that it is the drug that causes this. He tells me I can just stop taking it if I want to. I feel like I am backed into a corner. There are not that many drugs to choose from and this drug is suppose to have the least amount of side effects. Any advice?

mscarolyne · Newbie Joined: Jun 13, 2004 Posts: 1 Location: Canada

Hi

I recently just went OFF copaxone in the last few weeks becuase of side effects myself...since starting Copaxone over 2 years ago, I have developed lipo-atrophy, but worse...gained 70 lbs and began swelling up every day! Literally swelling up with fluid to the point of feeling like I was about to burst! When I researched this on the 'net, the "rare" side effects for Copaxone included weight gain and swelling of limbs. Huh...no one ever told me about that before!

Anyway...I figured I had reached the point of diminishing returns...and was glad to go off it. My doctors want me to stay off all drug for 6 months or so to allow time for my body to "calm down" and see if I can shed some weight...so far 7 lbs in 2 weeks...not bad....I am feeling SOOOO much better now!

So...the best advice I could give you is...trust your instincts...and look at the pros vs cons...

Carolyne

seahorse · Posted: Thu Jul 01, 2004 1:24 am Post subject:

hi alicia,

i take cop since 1,5 years now and "my" side effect are not as terrible as carolyn describes hers. i got reaction at the injection site (as lots of people report), and once, i got a so-called flush, that was really frightening. but still, i can get along with these effects, as long as i dont get a relapse (and I didn't since i take cop).

best wishes, antje.
_________________
"Anything essential is invisible to the eye.” Antoine de Saint Exupery, The Little Prince

Hazel · Guest

Hello Alicia,

I've been taking Copaxone for 1.5 years and have experienced problems at the injection site only.
At 48, I have been diagnosed for 2 and a quarter years and have put on at least a stone in that time, but I believe that this was because I was eating the same amount as I used to when I was more mobile. The weight is starting to go now that I'm cutting out all the sweets, desserts, chips etc. - as well as exercising the bits that I can still move!

I still look on the copaxone as something to keep me going until there is something on the market that will actually repair the damage done by MS.

There are a number of things being researched and even being trialled at the moment (maybe this Aimspro) that are giving me hope that they are getting closer to the treatment to repair the damage.
Hazel.