Who is on Copaxone?

[Luna143]

I have recently stopped using Avonex due to side effects and have done a lot of reading on alternatives.  My neuro suggested Copaxone or Gilyena.  I am leaning toward the Copaxone and am reaching out to you for your experiences with this treatment.

1.  Side effects
2.  Site reactions
3.  Auto injector or not
4.  Length of time on the med
5.  Injection process (cold or hot packs etc)
6.  Do you rotate sites
7.  Any other info that may be helpful

Thanks!!

[JaneK1975]

I started Copaxone on February 2nd. My experience is as follows:

1.  Side effects: None. I love it.

2.  Site reactions: Welts, bruising, lumps. This is the worst part, to be completely honest. Not fun, but not a deal breaker either.

3.  Auto injector or not: I use the autoject now, but will be learning to inject manually sometime soon. The autoject is great, but I think I could have more control over the injection process without it. Basically, I want to try both techniques to see which I prefer for each location.

4.  Length of time on the med: 41 days, if I'm adding correctly.

5.  Injection process (cold or hot packs etc): I tried the cold and hot packs and didn't find them useful, although others do. I basically put all my tools out on a table and go step-by-step through the injection process. I try to be very methodical about it so I don't screw something up. My fiance has saved me several times from hitting the release button on the autoject with the safety still on (which I hear is messy).

6.  Do you rotate sites: Religiously.

7.  Any other info that may be helpful: It's not a cake walk, but it ain't too bad either. I am thankful to have access to a drug that does not cause flu-like side effects. I am also hopeful that it will be effective in reducing relapse frequency and severity.

If you are the type that likes to read scientific journals, PM me your email address. I'm a student, so I have access to some medical journals and I read a few before choosing Copaxone. I was glad to be able to review the scientific evidence before starting Copaxone and feel it has allowed me to have a realistic idea of how much Copaxone might help me in managing my MS.

Best wishes,
Jane

[cjldb]

I too am on Copaxone but I'm relatively new to it too. I've been on it for about 5 months now. My site reactions are mild. In the beginning the medicine stung like a bee sting for 10-15 minutes afterwards so I used heat before and cold packs after each injection. Now it is much better and I no longer use heat or ice. Sometimes they will still sting a bit but nothing like before (and even when they did sting it was very tolerable). I do occassionally get the lumps in my arms and thighs. I find the closer I go to the knee or elbow, the lumps and reactions seem a bit worse. Tummy and hips are great spots for me but I do rotate them religiously! I don't want the lipoatrophy that can occur.

I do use the Auto Injector because I am a needle phobic! I'm not sure I could do it without it. I have found that deeper is better...believe it or not. I use 8 on hips, thighs, and tummy and 6 on my arms.

As for side effects other than site reactions, the only thing I can see a difference in is acne. I'm not even certain if Copaxone is the cause but that's when it began. I've never had a perfect complexion but it's definitely worse than before.

My doctor didn't recommend Gilyena as a first line medication. He said there just wasn't enough research and it was too new for him to recommend but that many people seem to have decent results with it. It's a very personal decision. I'm sure you'll do what fits you best. Good luck!!!

[jenphilly]

I am still new on copaxone, but thought I'd share...   I started copaxone on January 6th.  

So far my only issues or problems are mild site reactions.   I use the heat before and cold after on my problem spots (arms and thighs)...  but I can do my belly shots with no heat / cold and still not have a problem.   I've played with the injection depth on the autoinjector and just change it for wherever I am doing a shot.  

I do rotate but only use 1 arm each week.   The arms are not quite as bad as when I first started, but they do tend to take a bit longer for the small lump to go away.  And I get no lumps or anything at all on my belly, you literally would have trouble knowing where I did the shot by the next morning.   My thighs are hit or miss...  sometimes, easy no issues, other times a lump that I will massage day or two after the shot and they breakup and go away by the next time I come back to them.   I use my belly for 2 sites per week, split myself in half (left belly, right belly)....  hips are no problem, tho they sting a bit more, but seldom get any mark or even a lump.  Guessing just more sensitive!  

The shot itself really does not hurt, most of the time, you really don't feel the needle itself...  and I have the clipper thingee for taking the needle off so I can toss the syringe, if the room is not bright, there are times I actually have trouble seeing where the heck the needle is to stick in the clipper, its that stinking thin!   I hated the thought of having a daily shot...  really was upset when I was told shots....  swear the worst part of hitting that button on the injector for the first time...  then laughing at myself for being such a big weenie :)    

The sting that you read about does lessen as you go along...  my first shots stung like all heck for about 5 minutes and the ice really helped with that.   But truly, I have no sting on my belly, very little on my thighs, some on my arms and my hip is usually where I do need to ice for a few minutes, but still its not really painful...  I tend to do my shot right when I start dinner, have the logic, if I'm busy, don't have time to focus or worry about the sting :)   works for me!!   I've not had any sting that makes me cry or wince or anything....  still think a papercut is worse!  

I've had no other side effects...  well except I had posted before, I have some spotting between periods that may or may not be copaxone related....  nothing major and not all the time, just out of the blue and not even so much to need to wear a liner.  But I'm 43, could be age related, tho yuck poo at that thought!!!!

I have absolutely no ill feelings...  no depression or such....  

It a decision only you can make, but before you consider gilenya, do a lot of reading...  a lot....  No one can tell you which way to go, but will share what my neuro told me when I had to chose a med....  she has been involved with the drug since the early studies and she said if I was her sister she would refuse to write the prescription there is that much concern over longterm effects....   And believe me, was really rooting for just popping a pill everyday, but this really isn't so bad...  if I was popping a pill, wouldn't have the fun of having a legit reason to walk over to the sofa and pull one side of my pants down and stick my butt in my hubby's face when we have to do the hip shot :)

Good luck with your decision!!  I hope you are doing well and feeling better coming off Avonex.

Hugs,

Jen