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    can i switch??

    (Sorry for long post) I've only been only betaseron for a while but it has been going sooo bad. i feel like the medication has hit me worse than the ms did. and i'm not even sure if i'll ever have an "attack" again since the only thing that really happened was stuff going numb and not being able to use my hands that good. that went away before i started the medicine except my hands are still kinda numb.

    Problem is since i'm stronger than before my neurologist thinks i'm doing fine. but of course i'm stronger than before, i was suffering an attack, i guess thats how to put it. i'm in my first year of college and this all started this year and its making me miss classes but i'm pretty sure they think i'm lying about my side effects. which bothers me but i understand why they think that i just don't know how to prove i'm not.

    It's so bad and i just can't do needles anymore. i hate every other day because its shot day and honestly i feel like i'm just going to stop. i don't even know if without the medicine the ms will get worse but better safe than sorry i guess. I just wanna switch to a pill at least. i've been reading and seen that BG-12 is good but i don't know if i can just ask my neurologist.

    The only two treatments she's told me was about betaseron and copaxone. And i cannot and..will not..switch to an every day injection medicine. She told me there was pills the first time we talked but said they didn't know the long term effects, like if you take it for 10-20 years, so she wanted to see the other two medicines. but honestly if that's true i don't care, i just need to get off these injections. i just wanna know if i can like ask to switch to pills even if she didn't recommend them starting off??? like can she say noo?? i'm alone in another state for college and i've never been sick or been to the hospital before this year and i just don't know how to do this =\ may seem dumb but yea..?

    #2
    I'm so sorry. Starting college is hard enough.

    I hate injections too and I get where you're coming from. I think you need to just ask your neurologist to switch. Be very straight forward.

    The medication selection is two-fold. Obviously, it needs to work. If you're still having relapses, most people would switch.

    But non-compliance is another reason to switch. If you can't deal with taking the injections and are at the point you want to skip them, you will start skipping them and that's bad too!

    I believe a good neuro will understand both sides of this. My current one is great and always asks how I'm doing with the shots and if I think I can handle them without skipping them. He basically encourages me to stick with it since they're working for now and tells me to let him know when I get to the point where I really am going to start skipping them!

    Also, I encourage you to really remember that MS is a weird disease. At the beginning, I felt like you. Only weird numbness and no big symptoms. I really thought I'd just be the person who never had another relapse. Then, I did and it really changed my world.

    I think getting on DMDs when you're young and staying on them is a key to preventing long term disability. Other people are strongly against drugs too. Its a personal choice but you should research it thoroughly. For me, it helps me stick with my treatment. I have to remind myself why its the right choice for me.

    Good luck! I'm sorry. I can't imagine being in college and having to take shots. I was 26 when I was diagnosed and it felt like a burden compared to all my friends. I started on betaseron also and hated that every other night I did my shot and went straight to bed, even on Saturday night when all my friends were off having fun... so I empathize.
    Symptoms Oct 2009, Dx Feb 2010. betaseron 2/10-2/12. Copaxone 3/12- present.

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      #3
      I agree. I told my neuro if I had to get/give myself injections it just wasn't going to happen. He put me on Aubagio, I haven't started yet as tehy are still doing the paperwork and getting the insurance stuff in line. I would have rather gone the BG-12 route but decided to start with this and then I have something to back me up if Aubagio doesn't work. Good luck to you, I can't imagine going through all of this and trying to get through college too.

      Comment


        #4
        Hi Selena,

        How long have you been on betaseron? If you feel that you have given it enough opportunity to work as well as you believe it should and if you are saying, ďI feel like Iím just going to stopĒ then it probably is time to consider other treatment options. You have two choices. You can allow your neurologist to make all treatment choices for you or you can educate yourself on treatment options so the two of you can make choices together.

        Tecfidera was approved only two weeks ago so your neuro could not have offered it before. However, Tecfidera was proven in Phase 3 trials to be more effective than betaseron, copaxone, and some other MS meds. Plus, it has a very good safety profile and a lengthy one too because it (dimethyl fumarate) has been used in Europe for two decades as a treatment for psoriasis. So it does have a track record, not in MS patients, but in humans, nonetheless.

        If your neuro is not an MS specialist, find one. Try locating the nearest MS center and make an appointment if it isnít a big problem traveling there. We drive over two hours to get to one. You want the best possible doctor, a specialist in your disease. In the long run it likely will make a tremendous difference in your quality of treatment.

        Many people manage MS through diet. Some use LDN (low dose naltrexone). These are a couple of the alternatives to the ďapprovedĒ meds but they all require considerable time to investigate and the inclination to do so. Not everyoneís cup of tea but itís good to know alternatives are being used and sometimes quite successfully.

        Cranberrysauce is totally right about finding a treatment to prevent long-term disability! Acting now to preserve your brain is important to avoiding disability when you are older. This cannot be overemphasized, please keep that idea in focus as you contemplate stopping or changing treatment.

        Remember that some MS activity is subclinical, destructive changes occurring when there is no outward sign of it happening, so you want to be treating MS to lessen that subclinical activity. All of the approved meds have PROVEN levels of effectiveness in doing that, plus there are the alternatives.

        Have courage. Make courageous choices. It is your life. We are all pulling for you, Selena.

        Comment


          #5
          yes exactly cranberry! honestly i have skipped a couple times. my memory is really bad so sometimes i forget but sometimes i have said no i can't maybe later even though i knew i'd forget later. i know i shouldn't skip but i just can't do it anymore.

          and myoak, i've only been on it for a little over 2 months i think. i know that's only a little bit but i just can't ever see myself doing it for years or my whole life! i kno if they would make me stay on a injection medication, i'd be skipping it and i know that's now good.

          i know anything can happen out of nowhere and i should stay on medication before it does but i can't do injections. i just can't. and i'm scared to ask my neurologist for pills incase she says no straight out. i mean can she do that? what do i do if she does? i'm be too much of a wimp to be like "then i can't take these injection medications"..i dont know..

          Comment


            #6
            also i was diagnosed in december 2012 and some people have been saying i should get a second opinion. i mean they found lesions in my brain and one in my upper spinal cord or something. and only one in my brain and the spinal cord one is active. i mean if they found those, it must be a correct diagnose right?.. they did a spinal tap too but i can't remember if they found something in that too. are people right about getting a second opinion?

            Comment


              #7
              Selena,

              Physicians use medical history and a neurological exam when MS is suspected. 90% of MSers have markers in their spinal fluid. Your MRI showed lesions in two distinct areas. All those things are used to point to a clear-cut MS diagnosis. You may take comfort in getting another opinion and that is perfectly ok. But it is nearly certain that the same conclusion of MS would be made, IMO. Iím so sorry to say that.

              You have to be totally honest and transparent with your doctor. Tell her everything. Articulate about your physical condition, about your fears, and about your hopes. She will listen and she will help you. Since we all forget things, many of us write done what we want to say and the questions we want to ask before going for the next visit. That way when we leave we have had the best visit and received the best counsel possible.

              It is so important to write things down. You will be surprised at the empathy your doctor has for you as you share your heart with her, Iím sure. Doctors depend on us to be honest about our condition, physical and mental. If you canít stand shots, tell her. If you can tolerate them but want an oral med, tell her so. Even if you love getting shots but still want an oral med, it is perfectly ok to insist on it. Be sweet and pleasant, smile and say, ďForgive me, but I must insist on an oral medication.Ē

              There is nothing unusual about wanting the convenience of an oral med. Most people are heading in that direction, I believe, as more oral meds have become available.

              Donít worry about what your doctor MIGHT say. Give her a chance and if she wonít put you on an oral med, go to a different doctor. It really is not a big deal. But I bet things will work out if you make an appointment and have your thoughts written down for her response.

              Things will get better. Your brain is doing work-arounds right now to restore health and function distorted by MS. Help it by being a good patient and having a sincere conversation with your doctor.

              I know it is tough sledding right now. You will make it through this time, Selena, you will.

              Comment


                #8
                thank you myoak. i don't really need the second opinion for myself. honestly my mother is the one who's telling how her friends say and people she works for think i should get a second opinion. she's probably just worried.

                but i'm actually pretty okay most of the time with the ms stuff. i wasn't okay when everyone was telling me "oh that's weird stuff going on, i don't know what it is". and well now i'm not okay because of the medicine and i wouldn't have to be dealing with the medicine if i never had ms but eh maybe that'll be dealt with soon.

                i just get really nervous about saying stuff on my mind, i usually keep it in because of what might happen. but i can't take the shots at all anymore. i rather not take medicine at all if i have to stay on shots. and i don't want for it to end up being like that because next thing i know, i actually do have another attack and who knows how bad it'll be.

                its so weird dealing with hospitals and medicines and stuff since i've neverr been sick. but you're right i definitely need to write things down because my memory is baddd right now. i just hope they'll put me on something easier so that i can stick with it and not end up worse.
                ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

                Comment


                  #9
                  You are welcome Selena.

                  Iím confidant you will have a good visit next time with your doctor because you will be prepared with your notes. Sometimes I list 6 or 7 things I want to be sure the doctor and I discuss and write a short note on each item. Doctors always seem to really appreciate that approach. I think they wish all their patients did that.

                  You do not have to take shots. There are 3 FDA approved oral meds for MS, Gilyena, Aubagio, and Tecfidera. It is highly probable your doctor will prescribe one of them when she realizes how much you dislike your current therapy and wouldnít stay on it anyway. Believe me there are plenty of neurologists who will prescribe an oral med if your present one wonít. Just make an appointment with a different neuro if you have to.

                  Itís your life Selena; you have the responsibility and the right to make such choices. If your doc wants you to continue getting shots for a few months to give betaseron a chance, politely say no thank you. Give her a chance to prescribe an oral, if she doesnít, walk out and find another neuro. A different one will welcome you with open arms. But honestly, I donít believe you will have a problem with your current doctor.

                  Family and friends are well-meaning. They love you and want so badly to be a blessing. Someone who loves you feels your pain. Many times you just have to let them babble. People have given my wife and me the craziest, weirdest suggestions about something they ďheardĒ was great for MS.

                  It is important to realize they probably know very little about MS but they want to help, perhaps it is a subconscious way of expressing love and concern. So we want to be gracious and accept their love remembering that MS in a loved one causes them stress also. Treat your family with love and your MS with science-based medicine, you will have success.

                  As always, you have my best wishes for good health and a life filled with adventure.

                  Comment


                    #10
                    yessss that's what i need to do. i keep focusing on that she'll say no but maybe she'll say yes. but if she does say no, i need the courage to say no to staying on the shots. and the courage of basically leaving because she'll see i'll be going to another doctor.

                    i just gotta see where i find one. i'm in a small town in Michigan and transportation is hard for me with no car. i might have to wait till i'm back home for the summer in jersey but i just hope no attacks happen before then.

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