Announcement

Collapse
No announcement yet.

I just don't know what to do

Collapse
X
Collapse
 
  • Page of 1
  • Filter
  • Time
  • Show
Clear All
new posts
Previous template Next
    #1

    I just don't know what to do

    Hello fellow Copaxone users

    I was dx in 2011 and started Betaseron right away. I was on it for 4 years and struggled whether or not I should go off of it because I was stable and no relapse but I felt like I had the flu every.single.day.

    My Neuro and I decided I should go off of it and try Copaxone since it's not an interferon. I've been on it now since April and have had no problems except for a slight stinging/itching that went away after about 10 mins. Then BAM. About a month ago, I got the dreaded side effect. The ear/neck/face flushing that felt like my whole head was on fire, and the shortness of breath. My husband was ready to call 911 but I knew about this and told him to wait even though I was scared out of my mind.

    Since that time, I have had a reaction similar to that almost every time I have taken it, but last nights was the worst yet. I had all the flushing, shortness of breath but now the shortness of breath was way way worse and I felt nauseous and had tingling in my hands and face and felt like I was going to pass out. After it subsided, I had severe chills which I've never had before.

    I refuse to accept that this is the way I have to live and I refuse to stop and let MS ravage my body. So I'm stuck. I'm stuck in the middle of this personal prison.

    Has any one of you had these horrible side effects? Do get get any better or go away?
    Sx's 5/1996 Dx'd 9/2011
    RRMS- Betaseron, Copaxone, Tecfidera, Aubagio
    Hope is the thing with feathers, that perches in the soul, and sings the tune without words, and never stops at all
    Tags: None
    #2
    sounds horrible

    Have you called your neuro?

    I've never heard anyone say that happened "almost every time," and I very much doubt your neuro will think you should keep taking it.
    1st sx 11/26/09; Copaxone from 12/1/11 to 7/13/18
    NOT ALL SX ARE MS!

    Comment

      #3
      It is horrible Mark!!!

      Originally posted by MarkLavelle View Post
      Have you called your neuro?

      I've never heard anyone say that happened "almost every time," and I very much doubt your neuro will think you should keep taking it.
      Thanks for posting Mark.

      YES! The first time it happened I called Shared Solutions and talked to a nurse and she told me about the reaction and I also called my Neuro and he told me that it was a possibility of this happening but it was benign so I just kept doing it. I have been marking on my calendar every time it happens and out of a month which is 12 injections, it's happened 8 times. And like an idiot I just believe that its a side effect and I should just deal with it. After the last one, NO WAY, not anymore.
      Sx's 5/1996 Dx'd 9/2011
      RRMS- Betaseron, Copaxone, Tecfidera, Aubagio
      Hope is the thing with feathers, that perches in the soul, and sings the tune without words, and never stops at all

      Comment

        #4
        Stop - now

        Call your neuro asap - this IPIR should happen only occasionally, not every single time. I have been on for six months and have only gotten the chills one night early on (like 2.5 weeks on). What is happening to you is not good.

        Please know there are so many other options for you for DMT's - you just need to find the right one!

        PS....I hope there is no big "C" for you...you are going thru too much.
        Diagnosed RRMS 4/7/15, symptoms for 8 months prior. Copaxone 4/27/15

        Comment

        Previous template Next
        Working...
        X