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    Gilenya & Breathing Problems

    I started Gilenya on Thursday and today on day 4 I've noticed that I can't "complete" a yawn. I constantly feel like I need to take a deep breath but I can't get a full breath of air. It's driving me BANANAS! Also, it feels like my lungs are filling up too early if that makes any sense. Like there's no room for more air. I have exercise-induced asthma and I don't smoke (quit 8 months ago). I know that this is a side effect but I really want to push through this if possible so that I don't have to take injections.

    Anyone have any tips to help me through this??

    PS. I did call my doctor to let her know. Waiting for a call back.

    #2
    Eleven months into my Gilenya previously problem-free treatment I suddenly began having slow heart rate and low blood pressure (my husband is a nurse so he checked me) and felt short of breath. I also have asthma, so I checked my peak flow to be sure it wasn't asthma causing me to be short of breath; it was normal. It was all very scary.

    I called my cardiologist's office and he had me come in right away for a check, even though my breathing, BP and heart rate were normal by the time I got there. All turned out OK, but between my cardiologist and my neuro, we decided I should change meds back to Copaxone.

    I only had "my" cardiologist because my neuro required a cardiology "clearance" before I went on Gilenya.

    If I didn't have a cardiologist, and the symptoms had continued, I'd have gone to the ER.

    You did the right thing to call your doctor. When s/he calls back, follow their directions on what to do. If you don't hear back from the doctor and you still have trouble breathing, go to the ER (call 911 if need be).

    I hope you feel better soon and it all turns out to be a minor side effect!

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      #3
      Thank you for all of that info! I spoke with my neuro and she said that it's not a serious problem and that if it's not bothering me too much, to stick with it and it should clear up. It is bothering me, but not enough to stop the medication. I'm breathing fine.... It's just that I constantly feel like I need to yawn and I can't.

      For now, I'll stick with it. Hoping it gets better soon. Fingers crossed! ��

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        #4
        If you read the literature you will see references to breathing side effects. I went ahead and trialed the drug anyway until I could gauge for myself what that might manifest as. Surprise, I was one of the small percentage of people who get that side effect. It was a feeling of oxygen hunger even at slight exertion. Also running in tandem with feeling short of breath: constant feeling of fluid in the lungs and an urge to cough to rid myself of that sensation/phloeghm in trachea, lungs.

        Not pleasant side effect but most definitely caused by the Gilenya. The shortness of breath i have so far compensated for but I cannot take meds such as benadryl or epiniphrine for the increased fluid in lungs because I am a vocalist and it dries me out. It is not troublesome enough to stop taking it and risk the higher likelihood of disease activity, so I've stayed on it. The shortness of breath has declined, somewhat, but the constant "frog in throat" crap is ever present and getting really old.

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          #5
          I know what you mean about the constant clearing of the throat. Luckily, it is now day 12 for me and the breathing problems have pretty much subsided as I'd hoped they would. Hoping it stays that way, because I hate injections and I have no copay for gilenya!

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            #6
            I have also had the feeling of not being able to get enough air in my lungs which started a few weeks ago. The last few days I've too have felt the need to clear my throat which I thought was due to allergies, maybe it's the gilenia.

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