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After 10 long years on Betaseron......

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    After 10 long years on Betaseron......

    Don't know why it's happening now, but after 10 years of being on BetaSeron, I am having horrible, long lasting, painful reactions. I have been so spoiled as I NEVER pre-medicate as is suggested. Also, I seem to be running out of sites that are not hardened or lumpy or bruised. I noticed last night there was blood in the tip of the needle/syringe, as if I had hit a vein. Of course, I've hit alot of veins in my lifetime, but within 15 minutes, my jaw began to ache, uncontrollable tremors began and a 2 hour bout of extreme leg pain. Actually thought of going to ER, but I live in a small town away from my specialist. Does anyone else seem to be having these reactions after NOT having them for the first 9 years?
    "And in the end, the love you take, is equal to the love you make"....the beatles..

    #2
    I was on Beta for 6 years and did great. Then I started getting huge knots. I mean huge sore knots. Pain and what seemed to be a bad ms flare up.
    This was not a flare up, it was what is now thought to be a reaction to the beta so I had to stop it. It cleared up within a few days of stopping it.
    It was one of the best drugs I was ever on. I then went to C and was later able to go to half dosing of Rebif.. Which as unhappy as I am with G.. may be my next option.
    You might try stopping it for a few days..

    Comment


      #3
      Are you keeping track of the batch #s of your shots?
      I've had some boxes of Beta that just weren't user friendly. Well, maybe one quarter to one half of the doses in the box that either caused site reactions or made me feel like I got hit by a bus.
      Try calling Betaplus and tell them what's happening. They can't change anything if they don't know about it.

      Comment


        #4
        Cinderelly, I agree about it being a good drug. I've never had a reason to want to get off, but after what happened last night, wow, I don't ever want that to happen again. I'm going to call tomorrow and see if I can stop for awhile. Just don't know what that would do after building up to where I am after 10 years.
        "And in the end, the love you take, is equal to the love you make"....the beatles..

        Comment


          #5
          Beta response

          I also have been on Beta for 6-8 years. It for the most part has been very kind to me. I also have lots of pink spots and lumpies under the skin. My nuero says I am running out of skin. Beta is the only DMD I have ever been on. Right now I am trying to ride it out until BG12 gets released by the FDA. Let it be on the market for a year, then give orals a try.

          Best of luck to you. I dread the thought of leaving beta before the bugs are worked out of orals!

          Comment


            #6
            Sometimes I think our immune systems just get pushed down too low. My theory anyway.. that and cup of coffee will get you coffee.

            Comment


              #7
              I did get a questionable "batch" one time and Bayer (Beta Seron) did an inquiry. Never heard back from them.
              "And in the end, the love you take, is equal to the love you make"....the beatles..

              Comment


                #8
                Have had this pain

                I was only on Beta for about 8-9months but what started out as good turned into the pain you just talked about. It ended up being so bad that I was sobbing into a pillow so I wouldn't wake up my kids. My Neuro at the time told me to (more or less) suck it up and get use to it. That its something I would have to get use to.

                I ended up switching Neuros (after I took myself Off Beta) and was told it sounded like I was having a reaction to the med itself. That I had made a very smart choice in going off. While I was on Beta I had also had 3 flares...and 5 rounds of steriods. While the shots are never fun it really did start out like good med that I thought was going to work for me...but alas it wasn't ment to be

                isamadjul
                (allyson)
                DX 10/10, JCV postitive by a lot (said Nuero lol), Betaerson, Gilenya, Tecifidera, Aubagio now on Ocerevus

                Comment


                  #9
                  So, I am curious to know more about the pain that you are all speaking of. I started on beta back in June 2011 (was peviously on Copaxone) and ever since then I have had serious pack pain issues. It just seems to get worse and worse every day. My Neuro finally put my on Lyrica to help subside and I think it's working some. I've wondered if it's from the beta, but I just got my 4 hr MRI results (they did all: head, neck, spine, etc.) and unfortunately, I have more lesions all over the place. So now, my neuro is looking for me to switch to Gilynia or Tsybri (sp?).

                  Comment


                    #10
                    My injection sites became red and inflammed.. then swollen and unbearable. ( if that is a word)
                    sharp pains in my legs ( not sure that was connected)
                    Then felt like an ms flare up.. But the site reactions I believe were a warning sign my body was not taking the drug well.. What I mean is in the beginning... it adjusted got better then after 6 yrs it got worse and it was like an allgeric reaction..NOT trying to scare new people who should adjust..

                    Comment


                      #11
                      And now the saga continues....last night I pre medicated, prepared the injection, (I do not use the auto inject method), found a site and began pushing medicine through...it would only go so far. I gave myself what was about .25 of the med. Pulled out the needle and thought seriously about just finding a different site to "finish off" the rest of the syringe. But somewhere I read or was told not to re-inject the same needle. So I prepped a new syringe, minus what I had already taken. It went in okay. I worried all night that I would O.D. Obviously, that did not happen. So I am living for a pill.
                      "And in the end, the love you take, is equal to the love you make"....the beatles..

                      Comment


                        #12
                        Originally posted by misspammy View Post
                        And now the saga continues....last night I pre medicated, prepared the injection, (I do not use the auto inject method), found a site and began pushing medicine through...it would only go so far. I gave myself what was about .25 of the med. Pulled out the needle and thought seriously about just finding a different site to "finish off" the rest of the syringe. But somewhere I read or was told not to re-inject the same needle. So I prepped a new syringe, minus what I had already taken. It went in okay. I worried all night that I would O.D. Obviously, that did not happen. So I am living for a pill.

                        Just FYI, I've done that in the past and just found another site to finish the shot.
                        My reasoning being that I shouldn't be able to infect myself with myself.
                        Actually, you disinfect each site which would minimize surface contamination plus you're only pushing the shot one way so nothing should wind up inside the syringe besides Beta.
                        I've had site reactions but never from having to use two shot locations.

                        Comment


                          #13
                          I've been on beta for about three years. I've had a few bad reactions, like severe chills and aches. But the reaction I had on Friday night was so bad that I just don't want to take it any more. Chills, aches, headache like I've never had and I felt like I was going to be sick too. I was up all night. Not fun....

                          Comment


                            #14
                            Originally posted by misspammy View Post
                            Don't know why it's happening now, but after 10 years of being on BetaSeron, I am having horrible, long lasting, painful reactions. I have been so spoiled as I NEVER pre-medicate as is suggested. Also, I seem to be running out of sites that are not hardened or lumpy or bruised. I noticed last night there was blood in the tip of the needle/syringe, as if I had hit a vein. Of course, I've hit alot of veins in my lifetime, but within 15 minutes, my jaw began to ache, uncontrollable tremors began and a 2 hour bout of extreme leg pain. Actually thought of going to ER, but I live in a small town away from my specialist. Does anyone else seem to be having these reactions after NOT having them for the first 9 years?
                            Misspammy
                            You just described the reaction I had about two weeks ago......I called my neuro's office the next day and told them about it......then I told them I was going on a "shot vacation " for two weeks...............well two weeks ended 4 days ago ....and I am still scared to take another...

                            What did you finally end up doing ? Are you still on Betaseron ? I have been on it for 6 years.

                            Comment

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