Taking Copaxone to Treat My MS

Lisa Emrich Health Guide March 19, 2009
  • The decision to use or not use a disease-modifying treatment is a personal one between yourself, your family, and your doctor.  Some patients decide to jump in and get started and others wait to see how their MS is going to progress.   Our community has begun to engage in a discussion reg...

24 Comments
  • Anonymous
    Mis
    Mar. 21, 2009

    Thanks for giving me the links to your blog!!  It's great to find other MS bloggers like myself Laughing

  • Anonymous
    Jen
    Mar. 20, 2009

    Hi Lisa---

     

    I'm trying to take a little hiatus from all the "MS talk", because it can really start to consume a person. But I came here just to comment because I have had such a good experience taking an interferon med:

     

    As you know, I take Betaseron. Not many people I know take this. I have had an excellent experience in terms of reducing my relapses....

    RHMLucky777

    Read More

    Hi Lisa---

     

    I'm trying to take a little hiatus from all the "MS talk", because it can really start to consume a person. But I came here just to comment because I have had such a good experience taking an interferon med:

     

    As you know, I take Betaseron. Not many people I know take this. I have had an excellent experience in terms of reducing my relapses. I went from yearly relapses (with endurances of 6-12 weeks) with increasing severities---all coming to a head with a year of out-of-control MS in 2005---- to a recent remission of nearly 2 years and a watered-down relapse (significantly less debilitating) this past year, due in part to a disease-modifying drug.

     

    I absolutely love my neurologist (3rd and final one until he retires) and his aggressive approach to treating MS. I have side-effects from the Betaseron, but the positives far outweigh the negatives and I will do whatever is in my power to slow the progression of my multiple sclerosis. I've experienced a few too many BAD relapses to be ambivalent.

     

    I'm glad Copaxone is working for you.

     

    Jen

     

    • Lisa Emrich
      Health Guide
      Mar. 20, 2009

      Hi Jen,

       

      I really do appreciate you coming by to contribute.  I understand about the all-consuming aspect of "MS talk" as I'm kinda in that place right now.

       

      It's really good to hear positive feedback about the interferon drugs, Betaseron specifically.  I made my decision to use Copaxone a little bit out of fear of the interferons. ...

      RHMLucky777

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      Hi Jen,

       

      I really do appreciate you coming by to contribute.  I understand about the all-consuming aspect of "MS talk" as I'm kinda in that place right now.

       

      It's really good to hear positive feedback about the interferon drugs, Betaseron specifically.  I made my decision to use Copaxone a little bit out of fear of the interferons.  I never gave them a second thought.  Ok, maybe a 2nd thought, but not a 3rd one.

       

      I'm so glad that Betaseron really stopped your relapses in their track and that last year's exacerbation was a mild one.  Admittedly, my last year was a bit rough MS-wise.  But I was also missing injections due to some extenuating circumstances which might have contributed to disease activity.

       

      I'm with you on fighting this thing.  If MS is going to make itself known in your life, the least we can do is try to tame the beast a bit.  Here's a toast to Betaseron continuing to work it's magic in your life.  Laughing

    • Anonymous
      Jen
      Mar. 20, 2009

      Thanks, Lisa. You know you ALWAYS rock n' roll in my book.Cool

    • Jeff Ü
      Mar. 22, 2009

      Jen, I recently switched from Copaxone to Betaseron after 6months due to neg side-affects of Copax.  I was dx last JUN, but I have been experiencing exacerbations since 2001...delay in proper diagnosis was a combination of misdiagnosis by doctors and rationalization by me that my problems were related to the misdiagnosed illness.  I like taking...

      RHMLucky777

      Read More

      Jen, I recently switched from Copaxone to Betaseron after 6months due to neg side-affects of Copax.  I was dx last JUN, but I have been experiencing exacerbations since 2001...delay in proper diagnosis was a combination of misdiagnosis by doctors and rationalization by me that my problems were related to the misdiagnosed illness.  I like taking Beta injection every other day.  I am starting Beta increasing the dose over time...so far I can deal with the interferon (flu-like) symptoms and am releaved not to have the copax injection site reactions I dealt with.

       

      I can also identify with your need to get away from the MS Talk, but I keep coming back just to see if there's something new.

    • Lisa Emrich
      Health Guide
      Mar. 22, 2009

      Jeff,

       

      Thanks for sharing your experience with switching FROM copaxone TO betaseron.  My experience is only one person's experience and can't speak for everybody.  I hope that Betaseron works well for you and that your MS is significantly slowed down by it.

       

      Thanks for stopping in and leaving a comment.  It's nice to get to know the...

      RHMLucky777

      Read More

      Jeff,

       

      Thanks for sharing your experience with switching FROM copaxone TO betaseron.  My experience is only one person's experience and can't speak for everybody.  I hope that Betaseron works well for you and that your MS is significantly slowed down by it.

       

      Thanks for stopping in and leaving a comment.  It's nice to get to know the folks who check in here occasionally.  Hope you enjoy the rest of your weekend.

    • Jeff Ü
      Apr. 23, 2009

      Lisa,

       

      I really do like reading your Shareposts because I get a lot of good information, and that keeps me coming back!

       

      I am tolerating the Betaseron well and I'm up to the full dose.  I plan to continue for now in hopes that it will lessen or delay future flareups. 

       

      My symptoms are progressively getting worse and I really...

      RHMLucky777

      Read More

      Lisa,

       

      I really do like reading your Shareposts because I get a lot of good information, and that keeps me coming back!

       

      I am tolerating the Betaseron well and I'm up to the full dose.  I plan to continue for now in hopes that it will lessen or delay future flareups. 

       

      My symptoms are progressively getting worse and I really don't know if it will slow this progression...Any thoughts about this stage of the disease?

       

      Thanks for caring!

      Jeff Ü

    • Lisa Emrich
      Health Guide
      Apr. 23, 2009

      Jeff,

       

      So glad that you are tolerating the Betaseron well.  Thanks so much for the kind words regarding my Shareposts.  I appreciate it.

       

      Regarding symptoms which continue to progress, the Betaseron is not really supposed to help the symptoms directly but to slow down the progression of the disease.  Hopefully your body will try to...

      RHMLucky777

      Read More

      Jeff,

       

      So glad that you are tolerating the Betaseron well.  Thanks so much for the kind words regarding my Shareposts.  I appreciate it.

       

      Regarding symptoms which continue to progress, the Betaseron is not really supposed to help the symptoms directly but to slow down the progression of the disease.  Hopefully your body will try to heal itself of some of the lesions and damage which contribute to the symptoms.

       

      We have a brand new writer here who has Secondary Progressive MS.  Her name is Vicki and I'm hoping that she will write about what happens when the disease begins to progress and doesn't really stop. 

       

      To be honest, I've got some symptoms which I believe are here to stay.  I've never had a complete 100% recovery after a relapse in the past 9 years.  The doctor's not ready to say that I've become SPMS, but it's probably in my future.

       

      Give the Betaseron time to really start working and contact your neurologist if there are symptoms which can be treated either with medication or physical therapy.  I've gained so much from physical therapy that I wish every MSer had my PT instructor.

       

      Hang in there,

      Lisa

    • Anonymous
      Jen
      Mar. 24, 2009

      I'm glad the Betaseron experience is working out for you, Jeff. It's the only med I've been on (for nearly the past 4 years and steadily for the past 3.) My doctor favors the interferons, especially Betaseron and Rebif. The shot schedule seems to work for me, because then I look forward to my days off. I DO get site reactions. Probably the biggest drawback...

      RHMLucky777

      Read More

      I'm glad the Betaseron experience is working out for you, Jeff. It's the only med I've been on (for nearly the past 4 years and steadily for the past 3.) My doctor favors the interferons, especially Betaseron and Rebif. The shot schedule seems to work for me, because then I look forward to my days off. I DO get site reactions. Probably the biggest drawback for me, even more than the flulike side-effects, which have become milder over time. But I am super fair-skinned so that might be part of the reason.

       

      Good luck to you!Smile

       

      Jen

       

      PS: I'm now going back to my self-induced hiatus--LOL

    • Jeff Ü
      Dec. 11, 2009
      Jen, I just wanted to let you know about my experience with Betaseron. The injections were easier to tolerate, though I also had some site rashes that lasted 3+ weeks. I also experienced elevated liver enzymes and had to stop taking some of my meds that affect the liver...enzymes eventually came down but I was never confident that I wasn't hurting my liver....
      RHMLucky777
      Read More
      Jen, I just wanted to let you know about my experience with Betaseron. The injections were easier to tolerate, though I also had some site rashes that lasted 3+ weeks. I also experienced elevated liver enzymes and had to stop taking some of my meds that affect the liver...enzymes eventually came down but I was never confident that I wasn't hurting my liver. So, I switched back to Copaxone...still don't like the injections, but I'm trying to find better ways to minimize the discomfort...e.g. I now take my injections in the morning after my shower...that allows me to get them out of the way and during the day as I move it seems to make the area feel better. Take Care! Jeff
    • Anonymous
      Jen
      Dec. 11, 2009

      Hey Jeff--

       

      Well, I'm glad you're at least on SOMETHING! LOL

       

      Yes, one of my friends here had elevated liver enzymes from Rebif. She is now on Tysabri. I'm hopeful for the oral meds which will be introduced this spring. My neuro seems to be on board, so I'll see in April.

       

      Stay well and enjoy the holiday season!

       

      Jen

    • Jeff Ü
      Dec. 11, 2009

      Jen,

       

      Glad to hear from you! Are you still on Betaseron?  I'm hopeful the oral meds are out soon as well!

  • Nancy D
    Mar. 20, 2009

    I began on Avonex 12 years ago ( I had been diagnosed with "probable MS" in 1974 at age 24 and was able to live  a very normal life with just minor problems from MS until 1988 when the diagnosis was made official with an MRI.)   If I had given in to the "worst case scenario" that was offered me in 1974 - I would not have had my two wonderful children...

    RHMLucky777

    Read More

    I began on Avonex 12 years ago ( I had been diagnosed with "probable MS" in 1974 at age 24 and was able to live  a very normal life with just minor problems from MS until 1988 when the diagnosis was made official with an MRI.)   If I had given in to the "worst case scenario" that was offered me in 1974 - I would not have had my two wonderful children and I would have been convinced I would be in a wheelchair by age 50.  Thank goodness I chose to be in denial and think all those smart doctors just goofed!

     

    Long story, but after 12 years on Avonex and doing fine (the first year I had a few flu like symtoms but I just took the shot before bed with two Advil and I was fine).  I had already started on Prozac because of fatigue (my neurologist wanted to see if I was depressed or if it was MS fatigue - no conclusion reached).

     

    Now at age 58 the MS has progressed (MRI showed new active lesions) and I (after much research and help decided to switch to Copaxone.)    It wasn't as if I had an extreme exacerbation but more like a slow, downward spiral in abilities (walking, fatigue, cognitive issues) and I had to leave my job and I am on disability now. Sometimes it is hard to figure out how much is MS and how much is being 58!  I heard someone say on this venue that "denial is good"... I agree!

     

    When I compare Avonex and Copaxone (this is only my second month, remember!) I feel that for the most part I preferred Avonex. The once a week injection made it seem easier to not let MS run my life. With Copaxone the everyday reminder is discouraging and I am experiencing bad site reactions.  I have to use heat first, then inject, then ice... the whole process takes much more time than Avonex.  I had found that I could use a smaller needle 25 gauge and 1" instead of the 23 gauge 1 1/4" which comes in the Avonex kit.  I'm not thin by any stretch but the "kit" is designed for all body types so the needle is longer. (check with your doctor)

     

    I feel that after all these years I am progressing to secondary progressive ( in which case it appears none of the ABC medicines have a good track record).  I'm not ready to stop all medication - as my neurologist said a diagnosis of SPMS would change many things.  For now I am on a three month trial with the Copaxone.  I am certainly not an expert or as knowledgeable as others who share here.  I've just been at it for some time now.  I felt that the Avonex was protecting me all the 12 years I used it and I never regretted my decision.  I really don't think depression was any more of a problem from Avonex than it would have been just from dealing with having a chronic "heavy, heavy hang over your head" disease.  Now having the daily reminder (with Copaxone and the site reactions) I feel the weight of dealing with MS more but hopefully my next MRI will not have any new, active lesions and I will move forward until the medical community comes up with our cure!  IT WILL HAPPENSmile

         Sorry to be so long winded.  I had a hard time deciding to switch to Copaxone from Avonex so I thought perhaps some of my experience might be helpful.  Best wishes to all of us going through these tough decisions!

     

     

    • Lisa Emrich
      Health Guide
      Mar. 20, 2009

      Hi Nancy,

       

      You've given some wonderful feedback on your experience with Avonex for 12 years and now Copaxone.  So sorry that the Copaxone is not going well for you so far.  I did find that the site reactions became less over time.  Now, it's somewhat difficult to remember just how they really felt at first.

       

      Wonderful that you went...

      RHMLucky777

      Read More

      Hi Nancy,

       

      You've given some wonderful feedback on your experience with Avonex for 12 years and now Copaxone.  So sorry that the Copaxone is not going well for you so far.  I did find that the site reactions became less over time.  Now, it's somewhat difficult to remember just how they really felt at first.

       

      Wonderful that you went ahead and created such a great family.  I have heard from other MSers that the recommendations during the time you were told "probable MS" were to NOT have children.  Thankfully that is not the case nowadays.  Having children is perfectly fine to do if you develop MS.

       

      What was your experience during the years between the official diagnosis and when you started Avonex?  If my math is correct, there were about 9 years in between.

       

      I hope that the Copaxone does get you back to a neutral state and that SPMS is a bit further away.  But living with MS for 35 years and just now having your neurologist think about SPMS is good news for others who worry about the rate of progression in the future.

       

      Nancy, thank you for your contribution to the conversation here.  It's important to get many different viewpoints and experiences.

    • karen
      Mar. 20, 2009

      Your story was very helpful to me. I am going to be starting Avonex soon. (as soon as the insurance company decides to approve it ) LONG PROCESS) I am hopeful to see that you did good on Avonex for all those years. I hope I do as well. I wish you lots of luck on the Copaxone!!!! Im sure it will get better! Karen

  • kelldey
    Mar. 19, 2009

    As I stated on Merely Me's initial discussion about the decision to begin treatment, taking Copaxone was an easy decision for me. My mom started taking Copaxone in 2001 and has not had an exacerbation since. I was very encouraged by this, so I decided (or convinced myself) that I would have similar results since we share DNA.

     

    I also felt that a daily...

    RHMLucky777

    Read More

    As I stated on Merely Me's initial discussion about the decision to begin treatment, taking Copaxone was an easy decision for me. My mom started taking Copaxone in 2001 and has not had an exacerbation since. I was very encouraged by this, so I decided (or convinced myself) that I would have similar results since we share DNA.

     

    I also felt that a daily injection, though unpleasant, would work better for me in that it would become part of a routine. If I had to take something every other day, three times a week or once a week. I knew I would forget. With Copaxone, I don't have to think, I just take it between 4 and 5 p.m. every day. That's about the time I get home from work during the week, so it works out well for me.

     

    I have had success so far with Copaxone. After six months, I have no new lesions and no active lesions. So Liquid Gold is doing its job!

     

    Peace,

    Kelley

    • Lisa Emrich
      Health Guide
      Mar. 20, 2009

      Hi Kelley,

       

      I'm so glad that the Copaxone is working out well for you.  It does make sense that if it is working for your mother, it should work for you.  At least it sounds logical, right?

       

      The best part of the news, however, is that you haven't developed any new lesions, don't have any active lesions, and I don't believe that you've...

      RHMLucky777

      Read More

      Hi Kelley,

       

      I'm so glad that the Copaxone is working out well for you.  It does make sense that if it is working for your mother, it should work for you.  At least it sounds logical, right?

       

      The best part of the news, however, is that you haven't developed any new lesions, don't have any active lesions, and I don't believe that you've had another relapse.  Is that correct?  If you have, I'm sorry if I've forgotten.  I'll blame the MS brain on that.  Kiss

       

      I, too, prefer the daily schedule.  My injections occur right after my shower (whatever time of day that is).  The only problem I have is that on the days I skip the shower, I sometimes forget the injection.  Haven't quite worked out the bugs in that system.

       

      It's good to see you here and I want to thank you for your contributions to the conversation.  Thanks

  • karen
    Mar. 19, 2009

    I am starting Avonex shots soon...Im a little concerned now after reading about the depression side effect.(Im wonering if I should switch to Coxapane) I have a history of depression and I take an antidepressent daily. Does anyone know if beings that I am already on the antidepressants should I not worry about that side effect happening after starting...

    RHMLucky777

    Read More

    I am starting Avonex shots soon...Im a little concerned now after reading about the depression side effect.(Im wonering if I should switch to Coxapane) I have a history of depression and I take an antidepressent daily. Does anyone know if beings that I am already on the antidepressants should I not worry about that side effect happening after starting the shots, or do you think the shots will make my antidepressents ineffective? I sure dont want to be in that boat again because having severe depression is a horrible thing!!!

    • Lisa Emrich
      Health Guide
      Mar. 20, 2009

      Hi Karen,

       

      That's exciting news to hear that you've chosen a disease-modifying treatment.  There are plenty of people on Avonex who do not experience increased depression while on it.  And there are MSers, like Jen who commented below, who use an interferon and do really well on it.

       

      What I would recommend is that you report any increased...

      RHMLucky777

      Read More

      Hi Karen,

       

      That's exciting news to hear that you've chosen a disease-modifying treatment.  There are plenty of people on Avonex who do not experience increased depression while on it.  And there are MSers, like Jen who commented below, who use an interferon and do really well on it.

       

      What I would recommend is that you report any increased depression, anxiety, or suicidal thoughts to your doctor immediately.  Don't fret over it in advance, just be aware of any mood changes.  It is possible that you might need to adjust your antidepressant dosages, but that is not an alarming thing to need to do.

       

      Don't be afraid to pre-treat yourself with some Ibuprofen or Tylenol to combat the potential flu-like side effects.  I hope that Avonex works well for you and hope that you continue to let us all know how it's going.

    • Lisa Emrich
      Health Guide
      Mar. 20, 2009

      Also, Karen, read Nancy's comment below.  She gives some great feedback on her experience with Avonex.  She really felt like it was doing a good job for her over 12 years.  That's a great vote of confidence.

    • karen
      Mar. 20, 2009

      Thanks Lisa. I really appreciate your response and your encouragement!!!! This site has already hepled me so much! Its just a great feeling to talk to people who understand this crazy disease!

  • Joan
    Mar. 19, 2009

    I selected Copaxone for the same reason: my history with depression steered me away from the interferons.  I haven't had a major exacerbation since I started on Copaxone, and have had no change in my MRI for about 5 years.

     

    I've had the real bad reaction only twice in these 9+ years, and I was prepared with knowledge and awareness each time so wasn't scared. It...

    RHMLucky777

    Read More

    I selected Copaxone for the same reason: my history with depression steered me away from the interferons.  I haven't had a major exacerbation since I started on Copaxone, and have had no change in my MRI for about 5 years.

     

    I've had the real bad reaction only twice in these 9+ years, and I was prepared with knowledge and awareness each time so wasn't scared. It felt like this: a sudden rushing in my ears and washed out vision while I felt like my head was burning up with fever.  It lasted less a few minutes, then I was pretty tired afterwards.

     

    But now I'm now on disability due to MS fatigue, and the neurologists think I'm transitioning to Secondary Progressive so am wondering if I should stop the Copaxone since it isn't used for SPMS).  I've had MS for about 23 years and nearing that place in time where RRMS turns into SPMS.

    • Lisa Emrich
      Health Guide
      Mar. 20, 2009

      Hi Joan,

       

      So we have a few things in common.  It's nice to know that I'm not all that unique.  Wink  That's amazing news to hear that you've been major-relapse-free for so many years, but maybe not so great to think that you're on the edge of SPMS. 23 years is a long time and I'm glad that you are doing pretty well with your MS (all possibilities...

      RHMLucky777

      Read More

      Hi Joan,

       

      So we have a few things in common.  It's nice to know that I'm not all that unique.  Wink  That's amazing news to hear that you've been major-relapse-free for so many years, but maybe not so great to think that you're on the edge of SPMS. 23 years is a long time and I'm glad that you are doing pretty well with your MS (all possibilities considered).

       

      I really appreciate all of your contributions to the conversation here.  It's a nice complement to our MS blogging community, don't you think?