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    Thinking and reading too much

    I have been reading the posts about people starting Tysabri as their first DMT. I am 43, work FT. I have 2 lesions on my brain and one small one between T7 and T8. I have had only sensory symptoms (buzzing and vibrating). Evoked potentials have come back as normal vision and arms, abnormal legs. If I really think back, I think I had symptoms starting about a year ago, but again all of those symptoms were sensory and going away. I have been on Copaxone for 9 weeks. My doctor and I discussed and we think this is right way to go for me. She is thinking now that my prognosis is good. Am I being dumb for not taking Tysabri right away? She is going to test me during my next visit for JCV. I am so confused. I felt like I was satisfied with my decision now I am reading and second guessing myself.
    Diagnosed RRMS 4/7/15, symptoms for 8 months prior. Copaxone 4/27/15

    #2
    I would not second guess your Neuro without good reason. If she is testing you for JCV, she is thinking of putting you on one of the bigger guns.

    Discuss this with her. I would be asking her to give you an opinion on Tysabri for a few years and then Lemtrada (more info will be available by then).

    Before your next appointment you really need to get educated on Tysabri and the possible side effects to include PML. You need to ask yourself if you are able to handle it, because if not...no sense in even walking down that road.

    I think you are not being dumb...I think you are being wise. Good Luck.
    Katie
    "Yep, I have MS, and it does have Me!"
    "My MS is a Journey for One."
    Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

    Comment


      #3
      Your neuro may want to know if Tysabri is even an option. Her recommendation could change if you are jc- or positive with a low titer. If a medium or high titer, she may want to hold off unless really needed, as your risk for PML goes up with a higher titer number and number of infusions.

      Some people take a wait and see approach. Stay on Another DMT, but if relapse or start to progress, switch.

      Since they now believe damage can be done even when MS appears to be quiet, some opt for Tysabri right away.

      It is a tough decision to make. As Katie suggested, do your research, have your questions ready, and discuss it with your neuro. There is also a Tysabri thread in medications that can help if you want reach out there.
      Kathy
      DX 01/06, currently on Tysabri

      Comment


        #4
        If you are good with your doctor, I would just go with her suggestions. I was on Copaxone for many years. My doctor just suggested I change to Tysabri after I had an MRI. I wasn't sure but then I read lots of positive posts so now I've had 3 infusions. Happy to stop the shots.

        I'm 62 and have had MS since 1986 when there were no DMT's.

        Toot
        toot

        DX 1986 currently on TY
        Copaxone 2003 to February 2015

        Comment


          #5
          Toot - question for you

          Originally posted by toot2818 View Post
          If you are good with your doctor, I would just go with her suggestions. I was on Copaxone for many years. My doctor just suggested I change to Tysabri after I had an MRI. I wasn't sure but then I read lots of positive posts so now I've had 3 infusions. Happy to stop the shots.

          I'm 62 and have had MS since 1986 when there were no DMT's.

          Toot
          Toot, when you were on Copaxone, did your symptoms progress a lot? I am curious about your journey if you wouldn't mind sharing. Mine is "mild" right now with minimal lesions so if you would be willing to share I would appreciate it.
          Diagnosed RRMS 4/7/15, symptoms for 8 months prior. Copaxone 4/27/15

          Comment


            #6
            Thank you

            All, I agree she is thinking ahead to see if Tysabri is even an option for me (and it is the one blood test out of the million that were already done that wasn't done yet). She specifically said to me that for me, she would have chosen Copaxone as the way to start (the previous neuro that I saw - her partner, was the one who put me on Copaxone). So she may be thinking ahead, but feels that Copaxone is right for me right now. I think I trust her. I have only had one appointment with her so far, but that appointment was long (over 1 hour) and she took her time to not only understand my symptoms, my tests and everything going on health wise, but also to understand me, my life and my family. She recommended Vitamin D for my son - I appreciated that a lot.
            Diagnosed RRMS 4/7/15, symptoms for 8 months prior. Copaxone 4/27/15

            Comment


              #7
              Boymom123,

              It sounds like you might be relatively new to your MS diagnosis and concerned about drug choice. Can I recommend the following?

              This is a presentation by Dr. Vollmer and Dr. Corboy of the MS Center in Colorado. It basically says to hit it MS hard in the beginning with the most effective DMD currently available. The presentation starts at the 55 minute mark. The PDF of this presentation is the 2nd link. You will need the 2nd to help understand the 1st.

              https://www.youtube.com/watch?v=VeMVeycCZxY
              https://www.mscenter.org/images/stor...oy_DMT-ppt.pdf

              I would also recommend the following Webinar that deals with brain health. It is by Dr. Vollmer and explains why brain health is so important to MS, and why the strongest drugs are the best.

              https://www.youtube.com/watch?v=WOYI8_5JZUY

              Copaxone is a starting point, but from data currently available, it's efficacy doesn't reach that of Tysabri, Lemtrada, or Rituxun when it becomes available.

              Comment


                #8
                Yeah, based on all I have come to know it's just dumb to wait until MS is progressing before you use a medication that can actually slow that down. It would be one thing if these drugs repaired the damage that waiting for progression to show up caused, (and face it, MS will progress,) but they don't, so why on earth would anyone chance waiting? I don't get it.

                I get because these drugs have caused deaths and are serious and nothing to play with, yeah maybe waiting to see if the disease progesses or trying to catch it before disability happens may be a plan to use a safer drug at first.

                Boymom.... I was 43 when my first symptom happened and in my ignorance I thought if I had MS, mine would be mild and it would stay that way. Boy was I wrong. In 4 years this thing went from mild little tingling patches on my body that always went completely away to cogntive , messing with my brain that took awhile to remitt but not all the away to now, on the brink of disability and my life in crisis and turmoil. So please take MS seriously. Be so glad you have a diagnosis before you get to a point of no return. Be glad you can treat this aggressivly. Its true that you canbe asymptomatic and damage is still being done. It happened to me.

                Comment


                  #9
                  Shel67

                  Originally posted by shel67 View Post
                  Yeah, based on all I have come to know it's just dumb to wait until MS is progressing before you use a medication that can actually slow that down. It would be one thing if these drugs repaired the damage that waiting for progression to show up caused, (and face it, MS will progress,) but they don't, so why on earth would anyone chance waiting? I don't get it. <br>
                  <br>
                  I get because these drugs have caused deaths and are serious and nothing to play with, yeah maybe waiting to see if the disease progesses or trying to catch it before disability happens may be a plan to use a safer drug at first.<br>
                  <br>
                  Boymom.... I was 43 when my first symptom happened and in my ignorance I thought if I had MS, mine would be mild and it would stay that way. Boy was I wrong. In 4 years this thing went from mild little tingling patches on my body that always went completely away to cogntive , messing with my brain that took awhile to remitt but not all the away to now, on the brink of disability and my life in crisis and turmoil. So please take MS seriously. Be so glad you have a diagnosis before you get to a point of no return. Be glad you can treat this aggressivly. Its true that you canbe asymptomatic and damage is still being done. It happened to me.
                  <br>
                  <br>
                  Shel, I understand your point.&nbsp; But am I correct that you just got diagnosed now and have not been on a DMT until now?&nbsp; Forgive me if I am incorrect.&nbsp; If I am correct, I think the difference between our situations is that my symptoms just started and I was diagnosed within 6 months of the onset of symptoms.&nbsp; I was put on a DMT as soon as I was diagnosed, so perhaps my progression will not be as significant as yours.&nbsp; I am not in any way trying to cause an issue, I am just trying to clear up where we are at in our horrible journey.
                  Diagnosed RRMS 4/7/15, symptoms for 8 months prior. Copaxone 4/27/15

                  Comment


                    #10
                    RU4cats

                    Originally posted by ru4cats View Post
                    Boymom123,

                    It sounds like you might be relatively new to your MS diagnosis and concerned about drug choice. Can I recommend the following?

                    This is a presentation by Dr. Vollmer and Dr. Corboy of the MS Center in Colorado. It basically says to hit it MS hard in the beginning with the most effective DMD currently available. The presentation starts at the 55 minute mark. The PDF of this presentation is the 2nd link. You will need the 2nd to help understand the 1st.

                    https://www.youtube.com/watch?v=VeMVeycCZxY
                    https://www.mscenter.org/images/stor...oy_DMT-ppt.pdf

                    I would also recommend the following Webinar that deals with brain health. It is by Dr. Vollmer and explains why brain health is so important to MS, and why the strongest drugs are the best.

                    https://www.youtube.com/watch?v=WOYI8_5JZUY

                    Copaxone is a starting point, but from data currently available, it's efficacy doesn't reach that of Tysabri, Lemtrada, or Rituxun when it becomes available.
                    Sorry, the link doesn't seem to be working on the second post. Can you double check that please? SOrry!
                    Diagnosed RRMS 4/7/15, symptoms for 8 months prior. Copaxone 4/27/15

                    Comment


                      #11
                      Originally posted by Boymom123 View Post
                      Sorry, the link doesn't seem to be working on the second post. Can you double check that please? SOrry!
                      Hmm. The "shrinking" of the url seems to be the problem. Google "Vollmer Corboy PDF" and click on Highlights from the 2015 Spring Education Summit. Their's is the 3rd presentation down "overview of Disease Modifying Therapies". The PDF is listed there. Hope this helps. I know just enough about the Internets to make me dangerous. LOL

                      Comment


                        #12
                        Originally posted by Boymom123 View Post
                        <br>
                        <br>
                        Shel, I understand your point.&nbsp; But am I correct that you just got diagnosed now and have not been on a DMT until now?&nbsp; Forgive me if I am incorrect.&nbsp; If I am correct, I think the difference between our situations is that my symptoms just started and I was diagnosed within 6 months of the onset of symptoms.&nbsp; I was put on a DMT as soon as I was diagnosed, so perhaps my progression will not be as significant as yours.&nbsp; I am not in any way trying to cause an issue, I am just trying to clear up where we are at in our horrible journey.
                        The on set was about 5 years ago. I began mild, or so I thought, it wasn't until significant symptoms hit me I knew this was MS for sure and I was diagnosed recently. I wish I had been diagnosed 5 years ago and put on big guns because of how this thing operated while I was asymptomatic. If I had attacked it, maybe it would not have attacked me and now there is permanent damage.

                        Since no one knows how MS will progress in anyone I think treating it like the enemy it is a good idea. The thing is, waiting to see if it will remain mild and finding out it's not, it's too late. If I knew this, I would have team to neurologist getting a diagnosis. I thought of I have it, it's not bad and it won't ever get bad. How delusional was I?

                        But I do understand the seriousness of this choice. I am nervous as heck leaning towards TY. I'm going Thursday for the testing for all the oral meds. Once I know of
                        If I'm positive or negative I'll make a decision.

                        Comment


                          #13
                          Originally posted by ru4cats View Post
                          Boymom123,

                          It sounds like you might be relatively new to your MS diagnosis and concerned about drug choice. Can I recommend the following?

                          This is a presentation by Dr. Vollmer and Dr. Corboy of the MS Center in Colorado. It basically says to hit it MS hard in the beginning with the most effective DMD currently available. The presentation starts at the 55 minute mark. The PDF of this presentation is the 2nd link. You will need the 2nd to help understand the 1st.

                          https://www.youtube.com/watch?v=VeMVeycCZxY
                          https://www.mscenter.org/images/stor...oy_DMT-ppt.pdf

                          I would also recommend the following Webinar that deals with brain health. It is by Dr. Vollmer and explains why brain health is so important to MS, and why the strongest drugs are the best.

                          https://www.youtube.com/watch?v=WOYI8_5JZUY

                          Copaxone is a starting point, but from data currently available, it's efficacy doesn't reach that of Tysabri, Lemtrada, or Rituxun when it becomes available.
                          YES!! This is one of the videos I just posted about on another thread. It helped convince me to go all guns a blazing even though I'm newly diagnosed without bothersome lasting symptoms and only 1 true attack. I have a few lesions (maybe 10) and am doing well so far but want to do all I can early on (or early since I learned I have MS) for as long as my JCV status will let me.

                          Comment


                            #14
                            Originally posted by Boymom123 View Post
                            Toot, when you were on Copaxone, did your symptoms progress a lot? I am curious about your journey if you wouldn't mind sharing. Mine is "mild" right now with minimal lesions so if you would be willing to share I would appreciate it.
                            No real changes. After MRI in March (one lesion had improved and new one was just starting) and having been on Copaxone for 9 years doctor just felt it was time for a change. He said some people have had good results from TY. So far so good. Monday June 29th will be #4
                            toot

                            DX 1986 currently on TY
                            Copaxone 2003 to February 2015

                            Comment


                              #15
                              Tysabri as first (or early on) DMT

                              Hi anyone reading this:

                              I was very much in the same place many of you are (or have been) as far as making a decision relating to my first DMT. I'm 38, diagnosed in March about a month after my 38th bday. I do not know how many lesions I have, but I think it is 3 in the brain and one in the spinal column. My neuro was more in favor of the Tysabri for it being in a category of being more highly effective than the injectable medicines. I also was JC virus negative. So, in her opinion, I'm an excellent candidate for it. Also, given that I am "young" and am currently not very encumbered by MS, she says it is all the more reason to really attack and make sure it stays at bay. While the injectables are proven to help, her basic point was to go with the "most effective" when weighing the risk factors (like JC virus presence/levels). (Side note on the JC virus topic: most neuros will test your levels every 3 months, some every 6 months to monitor risk).

                              That being said, I felt like I was mainly choosing between Tysabri and Tecfidera ultimately. Gylena (sp?) was an option as well, but I was afraid of the heart related side effects for it, having had some irregular heartbeat history.

                              As far as the current lesions, when my neuro confirmed the spinal lesion (between C6 and C7) she was more interested in going a more aggressive route. The video that has been suggested is a great video and helps to explain the reasoning on this. (As a side note, I have had difficulty getting the corresponding ppt to work as well).

                              I agree with what everyone is saying: try to get as educated as you can about the medications and be well informed. Discuss questions and your thoughts with your neuro. In my case, I had done my "investigating" and based on what I read initially I thought for sure that I would be going on Copaxone. (That was before meeting with the neurologist and before she received the additional results of my spinal MRI). However, when I met with her and talked over the medication choices more thoroughly I was already leaning toward trying Tysabri. I do want to do what I can to halt the MS. Something is better than nothing, but in my case I want to put full defenses into stopping the progression of MS in my body (and mind).

                              That being said, and I guess a disclaimer of sorts: All of these meds work differently in different people. I am going to be getting an MRI after 6 months of being on the Tysabri. That MRI is going to give an indiction of how effective the Tysabri is for me, as well as the follow up MRI 6 months later (1 year after being on Tysabri).

                              This is a very personal decision for you to make and discuss with your neuro. Although, as you read the posts, you may feel like we are trying to tell you to do one thing or another, but at least in my opinion that's not the case. I think that it is just a matter of trying to present our views, so that you can help yourself to make an informed decision and one that you feel good about.
                              RRMS Dx: 3/23/15
                              (Optic Neuritis Dx 2/27/15; Feb/2014 right leg numbness--at the time diagnosed as Sciatica, but probably first episode)
                              Started Tysabri 5/22/15: (Infusions: 5/22/15, 6/18/15, 7/16/15)

                              Comment

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