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Gilenya and weight gain?

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    Gilenya and weight gain?

    Hi everyone, so it's been a week and a half since I started Gilenya and I'm noticing that I'm gaining weight.

    I know this is not one of the side effects but I'm just not sure if it's a coincidence. I've gained about 5 lbs in the last week which is way too much, too fast for my liking. I haven't changed my diet at all, in fact, I started exercising. Not much but I'm up to doing 20 mins on a stationary bike. My stomach just feels bloated all the time and feels bigger.

    Anyone else have anything like this?

    Please tell me this will go away!! LOL I'm going to Disney next week and feel like nothing will fit me by the time we get there. haha

    #2
    Weight gain

    YES! Me too! I've been on Gilenya for a couple of months now and have been putting on weight. I thought I was going crazy because the side effects say we should be losing weight! I had to buy some new pants because of the bloating! :eek Good luck to you and I truly hope we are both wrong! Have fun at Disney!

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      #3
      Weight Gain

      I have also gained weight on Gilenya. I've been dieting and had lost 20 pounds. Started Gilenya 3 months ago and my weight is up 10 pounds. I suspected it might be the gilenya but this was not listed as a side effect.

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        #4
        I'm sorry to hear about your weight gain, but glad to hear I'm not the only one. Of course, my parents and sister don't think it's Gilenya. They blame my non existant exercising and diet. But I've been doing the same thing I've have in the last year since getting diagnosed. I actually found it easier to maintain my weight on Rebif, I don't think it's a coincidence and I wish they wouldn't make me feel so bad.

        The good thing is, I have my hubby's 100% support and he's the one I live with... that's all I really care about.

        I spoke with my family doctor yesterday after posting this message and well... he doesn't know too much about Gilenya. Which is understandable but he thinks it's not a coincidence either.

        Today or tomorrow I will be talking with the nurse from G for a follow up so I will mention it to her and see what she says.

        My neuro did say, that this is new and there is still the unknown... maybe this is one of them?

        I did another 20 mins on the bike this am, and hoping to do another 20 later in the afternoon. When I get back from Disney, I'm joining Aqua Fit with a friend. I am not letting myself get back up there!! LOL The good thing is, Gilenya is making me feel better to even be able to exercise!
        xoxo

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          #5
          Has your heart rate dropped at all? I was just wondering because I was thinking that the side effect of a decreased heart rate on Gilenya could maybe then cause your metabolism rate to slow down as well. Not much, but some, which could result in weight gain. Maybe...

          The cardiac muscle of the heart requires ATP, and that ATP comes from fat/glucose, aka "burning calories". So yes, a higher heart rate throughout the day will burn more calories. You have to remember though, cardiac output (Q) = stroke volume (SV) * heart rate (HR)...so with a larger SV (in well trained aerobic athletes), heart rate decreases, yet cardiac output stays the same. So a lower RHR is a good thing. A higher heart rate (as seen with caffeine for example) requires more calories to supply the increase beats per minute, and this can add up over the course of a day, and does indeed result in a higher BMR.

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            #6
            I've also gained a little weight since being on Gilenya. Unfortunately for me, my wedding is in 4 months, so hopefully I don't gain too much more so I can still fit in my wedding dress!

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              #7
              It's happening to me, too.

              I am also gaining weight, and even though I don't want it to be because of Gilenya, it certainly makes me feel better knowing that others are experiencing weight gains, too. I am a Lifetime Weight Watcher member, and the last 2 times I have attended meetings and weighed, I have gained. I was so very frustrated last night because I have upped my daily exercise, and I just knew I had lost. My first dose was March 23 after being definitively diagnosed in December, and I've gained almost 10 pounds! I promised myself that I would never put this weight back on once I reached Lifetime, and now I feel that I have no control. I am going back to the Weight Watcher basics in hopes that I can at least get back on track.

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                #8
                Spoke with my nurse navigator this morning. She said she had had no other calls concerning weight gain with gilenya; however, she didn't know if other navigators had or not. She made note of it, and she said it would be called to attention of Novartis. They keep notes on any/all side effects.

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                  #9
                  Hi everyone, we are back from Disney World!! What a GREAT but exhausting week it was! LOL I haven't done that much walking in over a year. I'm very happy that I'm feeling much better this year vs last year, and that I was able to take my first trip to Disney with my family.

                  As for the weight, it has stopped going up at 7lbs. I have lost 2 of the 7. I'm still at a loss with it. I've brought it up to both my neuro and family doc, they both were surprised and didn't know what to say to me other than exercise more.

                  I spoke with my nurse from Gilenya yesterday and she said she's had a couple of others complain of some weight gain. She said that they are keeping track and noting everything that patients say. She will be checking back with me in 1 months but also was surprised to hear about the weight gain. She said mostly patients loose weight.

                  My heart hasn't dropped, if anything it's always on the higher side. Hopefully I can nip this!!! I hate all my photos from Disney that I am in!!! LOL

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                    #10
                    just adding in that since may, I have gained 15 lbs. I too was just figuring it was lack of exercise etc, but this is too much gain. I usually just keep hovering on the chubby mark!
                    Kathy

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                      #11
                      I have packed on 20lbs since starting Gil back in feb 2011. I don't like this extra cushioning I have - and I have been eating right and just cannot loose. I have been doing weight watchers prior to taking G and all I have been doing is increasing! It is not a nice feeling.

                      I said this to my Neuro who tested my thyroid.

                      Is this G related??

                      Frustrated..

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                        #12
                        I don't want extra weight on me......

                        Originally posted by chaseyshorts View Post
                        Hi everyone, so it's been a week and a half since I started Gilenya and I'm noticing that I'm gaining weight.

                        I know this is not one of the side effects but I'm just not sure if it's a coincidence. I've gained about 5 lbs in the last week which is way too much, too fast for my liking. I haven't changed my diet at all, in fact, I started exercising. Not much but I'm up to doing 20 mins on a stationary bike. My stomach just feels bloated all the time and feels bigger.

                        Anyone else have anything like this?

                        Please tell me this will go away!! LOL I'm going to Disney next week and feel like nothing will fit me by the time we get there. haha
                        I have been working like mad to get off weight due to thyroid problems. Lost 25 lbs. so far. Another 10 to go. Please don't let this be true. It already is slower to lose since I need to watch for overdoing.

                        I need to fit in a mom-of-the-bride dress in July.

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                          #13
                          I lost about 18 lbs since started taking Gylenia 90 days ago. I weight the same as when I was 18 and I am 41

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                            #14
                            Count me in on the weight gain.

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                              #15
                              Hello, I'm new here. I was on copaxone for 7 years and got very tired of the puckered skin I now have at the injection sites, got tired of the pain of daily injections and jumped at the chance of switching to Gilenya. I've been on it for 4 weeks and have noticed stubborn weight gain, fatigue, chronic pain in the neck, shoulders and upper arms. I'm hoping it's just my body trying to adjust as with any new medication can shock the system. It does bum me out but I don't think I'm depressed...yet I'm trying to motivate myself to work out harder but I do get out of breath much more easily when doing cardio. I hope this is all temporary and can say as much in a couple of months. And happy to find this post!!

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