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Q: To medicate (or not?) - new here

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  • #31

    Just wanted to update you. I started Copaxone almost two weeks ago. Let me tell you, the injections are virtually painless compared to using the Rebif injector. Although I do feel a burning sensation right afterwards, it goes away after a few minutes of putting an ice pack on it. I do not feel the needle going in as I did with the Rebif. I am still healing from the surgery I had but I think it won't be long till I am back at the gym, I hope

    From what I understand, Copaxone is a protein so it makes me feel better that I am not injecting something into my body that is interfering with my immune system and causing me to have more infections. I know Copaxone is a daily injection but you are told to incorporate it into your daily routine and it soon becomes second nature. Also, another thing that really motivated me to go on Copaxone was that a lot of athletes on here are on that and have been for years. I would eventually want to go back to running again and in the short amount of time, I have noticed that my right foot is not dragging as much as it was without the DMD.

    Anyway, just thought I would update you and hope it is of some help in your decision to choose or not to choose a DMD.



    • #32
      To DMD or not to DMD

      I am 61 years old, it's been 13 years since my DX but over 20 years from first symptoms.

      I just got a new Neuro and a new MRI. When compared to a MRI from 8 years ago, results from the current MRI indicated no active lesions, slight progression of existing lesions, moderate overall plaque burden and overall brain volume within normal limits for a man my age. This is by far the best radiology report I have received since my original DX. When I asked my Neuro if there was any reason to consider a Disease Modifying Therapy, she replied I would say no. You have had MS for several years and have had very little change in your MRI over the last 8 years. Immune modulating therapy is typically used early on, and for more active disease states.

      When I mentioned my concern over cognitive decline due to the MS she offered a cognitive evaluation to set a base level, something I should have done years ago. I imagine the evaluation route would be a long road to therapy, if I decided to do it, so for now at least, no DMD.

      I will continue my endurance exercise and in fact am enhancing it to include heavy weight training and ellipticals in addition to my cycling. I continue to believe that exercise, with or without DMD therapy, is crucial to my well being as a person with MS.



      • #33
        TJ1, Not sure if you're still reading this thread, but thought I'd respond anyway. I'm on Extavia which is like Betaseron and outside of mild flu like symptoms when i first got on it (symptoms would only last part of a day) I've been pretty side effect free and I've been really happy on it. I can exercise, work, live my normal life. Giving myself a shot took some getting used to, I don't mind needles but the sight of my blood really bothers me, but its a small price for having no new lesions. If you're getting more lesions you should really consider a DMD because if you get a lesion in the wrong place you risk getting a disability that may have been avoided. I can't speak about any other drug but I hope this helps. I'm glad I got on a DMD early and even though I hate the sight of my blood I think it was the right decision for me. Ultimately its up to you to decide whether or not to use a DMD and there is no wrong answer but think about your decision carefully. You don't want to look back one day and feel you made the wrong decision. Take care and do what you feel is right.
        Rob Davidson
        Active With MS


        • #34
          Another Happy Gilenya User

          I have been on Gilenya since Feb 2011. I was diagnosed with MS in March 2010 (first symptoms had appeared 10 years earlier). They started me on Copaxone, but new lesions continued to develop and be active, new symptoms kept appearing. I also had site reactions (like being stung by a wasp every time). The neuro recommended Gilenya, due to higher effectiveness. I did the research on my own and decided to go for it.

          It has worked great for me so far. After about 3 months, I stopped getting new symptoms. On follow up MRI, lesions were disappearing. I'm not an ultra-athlete, but I do exercise and haven't noticed any difference in capacity/fatigue. Last weekend I walked a half marathon and it worked fine.

          I work FT, so I'm trying to avoid the flu-like symptoms of some of the other meds. Switching to Gilenya has turned my MS into an inconvenience, vs. a big black cloud that used to hang over me.

          I know there are folks who have concerns with new drugs that come on the market (I had one neurologist tell me "I don't trust the FDA"). But someone has to be in the first group and I decided I was willing to take the risk. I haven't noticed any side effects. I was a little worried about the increased risk of infection, but I haven't experienced that. I still seem to be able to avoid getting the germs going around most of the time. FYI - it's fine to get a flu shot (took me a few days to find that answer).

          I had MS for 10 years and didn't know it until enough damage had been done that it finally started showing up on the MRI. I missed the opportunity to take DMD until recently. Having the experience of changes in my health with a DMD that wasn't working, I'm very happy to be on Gilenya. Good luck to all who make the decision for themselves.


          • #35
            Checking back in

            Hi there - i haven't visited the site in quite a while. I was the person asking about DMDs and hemming and hawing as to whether I wanted to go on one. Long story short, I ended up going on Gilenya roughly a year ago. Zero side effects and good results on the MRI front. In retrospect, I'm not sure why I was so ambivalent, but that's how it went. Anyway, wanted to thank the board for the feedback -- especially the great Chad P -- I hope everyone's doing well and "hanging in there."


            • #36
              Thanks for the comments on Gilenya - After 15 years of Avonex injections, I begin taking Gilenya next week. I was a little nervous, but feel much better after reading this thread.


              • #37

                I was diagnosed in 2006 although I had had symptoms since 1998. I started on Copaxone and did ok for a year. My walking became increasingly altered so I tried Tysabri for 8 months with no change and I was quite concerned about the side effects. So I've been off meds since 2009 and doing well. I have to wonder if I'd be in the same spot if I hadn't taken any meds.

                We don't know what the future holds for us. Each of us is different and what works for one may not work for another. I subscribe to an ultra low fat diet, exercise, vitamin D and meditation.

                Early diagnosis can be a pretty up and down time and hard to make long term decisions. It sounds like you are keeping centered and looking around. Good for you-keep exploring and medication is only one part of the equation.

                Take good care,

                Teena Marie


                • #38
                  Oral Meds

                  Hi everyone! Long time New Mexico fan (Hi Dave!), first time on the forum. Dx about 3.5 years ago and relatively symptom free...certainly nothing unmanageable. I am very, VERY active. I've been diligent in my diet and have been on Copaxone for most of those years with little side effects. All sounds good, why would I consider changing??? The exercise is part of the problem. Few areas to inject due to low body fat. Well I have had site reactions, bruising (tried everything), pain, itching, big knots, etc. from early on. I have reduced the needle size, changed angles on and on and basically am now at the point that all say I am lucky that is all there is and tough it out. But I wear a two piece bathing suit! It ends up looking like I have been beaten Has anyone tried the new oral drugs? There are now 3 approved by the FDA (one just out but scary chemical used to treat couches). My first eval of Gilenya was the heart rate thing (I saw the post by the cyclist - one of my addictions) and side effects seemed silly to embark on if all I have are site problems. Any feedback from those taking oral meds?


                  • #39
                    Oral DMDs

                    Hi there -- i was all hung up on the "Gilenya will lower my heartrate and i won't be able to exercise in the way i do now" thing. I was wrong (as a few people on this board said i would be.) Been on it more than a year -- no side effects, at least any that i am aware of. Good luck to all!


                    • #40
                      Good to hear your results, TJ.

                      And welcome, Elisa Marie! I've been a bit swamped or I would have posted sooner. I imagine you are looking into Tecifidera (BG-12). Let us know what you decide to do. Summer is coming on fast and that means bikini season.
                      Dave Bexfield