Copaxone & Weight Gain?

FritzlerSE
FritzlerSE Posts: 5 Member
Hello everyone! I am 36 and was diagnosed with MS in July of 2011 after waking up one Friday morning with a numb left foot that led to an entire left side by the end of the day. I knew in the back of my mind what it meant for me as my father, his sister, my half-sister, full blood sister all have the disease. Also knowing a few other symtoms I had that my sister kept telling me she has and still does experience were MS like I was not shocked to learn what I feared was true. It was still a shocking thing to hear and absorb if that makes sense to anyone. Today I have very few symtoms and I feel great. My only complaint is the MS itch at times and buring on my left side when I am really, really tired. I control that with topomax which I was already on for migraines prior to the MS diagnosis - my drs just upped the dose to help the buring. I take also vitamin D3 at 2000 IUs /day which was only an increase when I was diagnosed.

I started copaxone in Jan. of 2012 and since I have packed on 10 pounds. I know to some that seems like very little weight to worry about, but for me it is. I worked very hard to lose 50+ pounds and keep it off several years ago that to have this happen is heartbreaking. My excercise levels have not changed since being dignosed. I run, teach spinning, cardio and step classes. I do body pump, TRX and turbo jam, etc.. I workout at the same levels I always have. I work full time and lead a very active lifestyle. My eatting habits are fairly clean due to my weight loss previously. I don't drink a lot of alcohol due to my migraines. Nothing has changed in respect to my daily food, drinking and daily habits. My sleep is ok - 6-8 hours a night is normal. So it's hard for me to understand where this weight loss has suddenly come from over the last year. I can only attribute it to the Copaxone. Has anyone else had this experience when going on copaxone? I would rather go off this drug than have the weigh keep packing on 10 pounds at a time...year after year.

Thanks in advance for your thoughts and support!

Replies

  • CkepiJinx
    CkepiJinx Posts: 613 Member
    I have been on Copaxone since 2007. My weight stayed pretty much the same until August of last year when I decided it was time to lose weight. I have not heard about weight gain being a Side effect but who knows. I would say try logging your food on here for a while, you would be surprised how fast calories can add up sometimes. I know I didn't realize how much I was eating or how much those little bites can add up throughout the day. Also talk to your doctor so they can rule out other possibilities. Good luck
  • FritzlerSE
    FritzlerSE Posts: 5 Member
    Thanks for the encouragement! My husband and I have talked A LOT about this subject and what has changed since I started copaxone. I have upped my mileage in running, started TRX, but I do I sit at my job more. I know I am more lean too. Most of my clothes fit the same but there are some that don't which is the strange thing. I have not changed sizes even with the weight gain. I buy the same sizes. When you google copaxone and weight the blogs and boards will scare the crap out of you! My sister just started the drug, so we'll see what she experiences. My dad took it years ago and he didn't gain weight from my memory.

    I am back to logging my food - I know it will help.

    Thanks again!
  • Benji49
    Benji49 Posts: 419 Member
    I haven't noticed a weight gain because of the copaxone - I started on it in 2010. If you have only been on it for a little over a year maybe your body is still adjusting to it? Or maybe they need to adjust the dose a little? And I agree with you - 10 pounds is a lot when you've struggled to get rid of it and kept it off.
  • ebbtime
    ebbtime Posts: 35 Member
    I did experience weight gain when I was on copaxone. My Doc didn't believe that was the reason but he allowed me to change meds anyway. I've been on Betaseron for 7 years with no relapses (knock on wood). But I hate to say the weight gain didn't end with changing the med. That's why I'm on here! I hope you have better luck!
  • FritzlerSE
    FritzlerSE Posts: 5 Member
    Benji49...you can adjust the dose of Copaxone? I was under the understanding you could not and that was one of the downfalls of this drug. My Dr. told me there are studies, or a study that just finished, that is proving to be promising about having patients take the shot every other day or every 3 days vs every day.

    The positive is after a year on copaxone I had no change in my MRI, noo relapses and I feel great. I am able to excercise the way I always have and then some. I have toned and leaned up, so some of my weight gain could be lean muscle. I can see that, but won't take that as an excuse to not discount meds as a battle. I am on here to prove that to myself AND watch my calorie intake. AND meet fellow MS's with weight struggles.
  • sed1217
    sed1217 Posts: 228 Member
    Happy to see this topic alive too, especially considering this group seems largely inactive (we just have better things to worry about in life than MS ;-) ). I'm about to start Rebif and have heard about weight and interferons, though if it stops the relapses, I'm down regardless.
  • Benji49
    Benji49 Posts: 419 Member
    When I started on Copaxone there was 2 different dosages for the injections - I wasn't given a choice but my neuro was. This may no longer be the case - I know they were doing a study about the doses and about the # of days you take it - could be the study that you heard about.

    As for Rebif - I've been on that. Just be careful and watch your WBC counts. Mine tanked after almost 2 years on it and I had to come off. Apparently now with Rebif if that happens they can change your dose for awhile to bring your WBC back inline and then they raise you back up to full dose. It's not a fun experience so just watch the levels.

    :flowerforyou:
  • sed1217
    sed1217 Posts: 228 Member
    That's good advice - thanks! I think I have to get a blood test every 3 months regardless on Rebif, but I'll pay attention to how I feel in between too.
  • Benji49
    Benji49 Posts: 419 Member
    That's good advice - thanks! I think I have to get a blood test every 3 months regardless on Rebif, but I'll pay attention to how I feel in between too.

    I actually had blood tests every month - and it still snuck up on everyone. If you start to feel overwhelmed and out of control, dizzy, off balance, uninterested in the world and totally exhausted (more than MS usually makes you feel)......make them test you whether you just had one or not. I'm told my reactions were extremely rare but if it can happen to me it can happen to anyone. Stay safe.
  • ikudbne12
    ikudbne12 Posts: 63 Member
    I did Copaxone for bout 2.5 years...Wt stayed stable so this was not something i noticed. Had 2 remissions in 5 months so i have since switched to Rebif. Havent noticed any issues (other than the welts) with wt gain on this either.
  • Yellerie
    Yellerie Posts: 221 Member
    I have been on Copaxone 2005-2007, Aveonex 2007-2008. Rebif 2008-2009 & Tysabri 2009-2012 until I devloped the JC virus & I didn;t have a problem with weight gain from any of them however the Methylprednisone is a different story every time they put me on it for a relapse I gain :( I am currenty praying for the release of BG12 hopefully that will work for me
  • I'm supposed to take Copaxone but I never remember to take it. :(