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kloe50
New Member


Date Joined May 2009
Total Posts : 7
   Posted 5/25/2009 1:39 PM (GMT -6)   
Hi everyone, I am new in this forum.  I have been diagnosed with MS in 1993 (RRMS).  Have been on Rebif from 2000 to 2004 and now this year I will be starting with Copaxone as I have a couple of scary relapse this year and thought that it was time to try a treatment again.  My question is or concern with Copaxone are the side effects.  I am very nervous at starting because of what I have read on other website of Copaxone experiences, i'm panicking before even starting, so I need your experiences on what kind of side effects did you all experienced when you started on Copaxone?  Thank you so much in advance.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 5/25/2009 5:10 PM (GMT -6)   
My experience with copaxone has been all good.  I know that we have had two members that could not take it.  They were both allergic to it.  You can get the IPIR, which is a scary but essentially harmless reaction.  I have had that a few times but it really has not bothered me.  I do get local lumps and some pain at the injection site but other than that, copaxone is a piece of cake.  Good luck.
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


kloe50
New Member


Date Joined May 2009
Total Posts : 7
   Posted 5/26/2009 7:15 AM (GMT -6)   
Hi and Thank you for your reply.  What is IPIR exacly?  And is there anything I can take before doing my shot so that if I get a reaction it's not so bad?  The reason I ask is that with the Rebif I would be able to take a couple of Tylenol half hour before and that way I wouldn't get the Flu like reaction so bad?  And did you stop getting the side effect say after a few months? 

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 5/26/2009 7:23 AM (GMT -6)   
The good news is that since copaxone is not an interferon, you won't get any flu-like symptoms.  The only symptom you get is an itchy or slightly painful lump.  That lump goes away after about a week, but since you have to inject everyday, you get to be pretty lumpy lol.  They tell you to rotate your shots.  I do my right thigh, then my left thigh, then my tummy then my left hip, my left arm, then my right arm and then my right hip and back again.  By the time I get around to my right thigh again, the old lump is usually gone.  I do feel around for a good smooth place to inject. 
 
The IPIR is the "immediate post-injection reaction.  It feels like you are having a really bad asthma/anxiety/heart attack.  I have had it a couple of times.  Many don't ever get it.  My experience has been that immediately after injecting I flush and get chest pressure.  I have never had pain (some claim to have chest pain).  It feels a bit like some one is sitting on your chest.  For me, it lasts about 15 minutes total.  Then I go back to feeling just fine. I had heard all about the IPIR from the copaxone nurses so when it happened, I was not frightened but rather uncomfortable.  I told my husband who enjoyed telling me how red I was.  He sat with me until I was feeling better. 
 
There is a bit of local pain from the shot.  The injection itself is quite painless but it burns like a bee sting about three minutes after.  I can't tell if you get used to that feeling or if as a side effect it goes away.  But it did seem like about a month went by before I was used to that.
 
Good luck. 


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Motown John
Regular Member


Date Joined Jun 2005
Total Posts : 475
   Posted 5/29/2009 6:34 AM (GMT -6)   
Friday a.m.
 
Good morning
 
My MS (20years) has progressed past the RR phase, but....
 
My neuro....a real big timer (Dr. Robert Lisak, Detroit, MI)  in the MS world, has told me that Copaxone is most effective therapy...
 
Great Luck...John
DX'ed June 21st, 1987
 


odettesmom
Regular Member


Date Joined Aug 2004
Total Posts : 274
   Posted 5/29/2009 2:22 PM (GMT -6)   
used copaxone for almost a year, but had painful injection site no matter what i tried. had similar problems with rebif. many readers have had good experiences with both, so it depends on the person. good luck to you. linda

kloe50
New Member


Date Joined May 2009
Total Posts : 7
   Posted 5/30/2009 4:02 AM (GMT -6)   
A big thank you to everyone with you encouraging replys, I really appreciate it and I am so glad that I found this place!! Take care and i'm sure you'll see me here again with questions,lol.

piggieshorts
New Member


Date Joined Jun 2009
Total Posts : 2
   Posted 6/24/2009 12:30 AM (GMT -6)   

Hello :-)

I have been on Copaxone since shortly after I was diagnosed September 2006.  For the first few months I had some pretty painful site reactions as well as welts... but they would almost always be gone in a few hours at the longest.  And was not an every day thing.  But as time went on, these reactions almost went away.  Still somewhat sore right after I injected, but very seldom welts.  But about a month ago I started to get welts again from time to time.  For some reason on my left hip, the past two times I have injected there (not in the exact same spot what so ever as I rotate religiously) I have had a welt about the size of a golf ball that stays for about a week... and is sore.  Not killer sore... but sore.  Most of the welt is under the skin and not totally visible like it's a golf ball glued to my side... but is noticeable to the eyes if looked at.  But for sure can feel it with your hand.  I do wonder why I am getting more of a reaction once again like I had when I first started.  But is it livable?  Well, I wish it would go back to the easy time I have had for most of the 2 1/2 years... but yes, livable.  And it the med is really doing the trick and keeping my MS from getting worse... I'll more than live with it.  :-)


clb2009
New Member


Date Joined Jun 2009
Total Posts : 6
   Posted 6/29/2009 6:11 PM (GMT -6)   
Hello,

I was diagnosed with MS in 2003 and began taking Copaxone in 2006. My first doctor never recommended anything that could help, but when I switched doctors (that was part of the reason why I switched), I asked if there was anything that I could take to postpone any onset, and he suggested Copaxone. I have had very good luck with it. I only get a redness or hard lump. Sometimes I hit a vein and it bleeds a little. I had an IPIR attack once, I think. No one told me about the possibility of these, and one morning after I gave myself an injection, I thought I was having a heart attack. It felt like the world was crushing my shoulders. I went to the emergency room actually, and they said that my heart was fine, they thought I just had a panic attack, well, now I know what it was. I've only had that once, though, and wouldn't give up my Copaxone, unless forced too. I think it has done me a world of good. No relapses since I started taking it, well, one very small one, my eye was odd for a while this spring, but nothing major.

Best of luck!!

Macs Mum
Regular Member


Date Joined Jun 2009
Total Posts : 46
   Posted 7/1/2009 6:30 AM (GMT -6)   
Hi All

I was officially diagnosed today by the neurologist (I cheated and read the MRI report being seeing him - so I had an idea) and I have chosen Copaxone for my treatment. I'll be starting it as soon as the community nurse gets a chance to come around my place and teach me how to inject myself. How hard was it for you to give yourself the first injection? Have you taught anyone else to give the injection?
They're not brain lesions, they're 'BRIGHT IDEAS'

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