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    To medicate or not?

    Hello,

    I am newly officially diagnosed with MS but have been living with symptoms for about 4.5 yrs. I feel pretty good for the most part, but will have off days. My symptoms are mainly numbness, slight weakness, sometimes pins and needles mostly on my left side. My balance will feel off too. My doctor wants me to take Tecfidera, but I hesitate for many reasons. Is there anyone out there that has been diagnosed for a while and has managed without medication? Or perhaps there are alternate treatment plans? Any feedback will be greatly appreciated. Thanks!

    #2
    I wish the numbers were bigger but the following study indicates that taking a dmd will prolong the time til you graduate to spms - on average.
    http://multiple-sclerosis-research.b...ogression.html
    This isn't even the most up to date I just did a quick search but this research site might be able to provide some helpful info.

    This is an important personal decision and I would just read up as much about the risks vs benefits. There are many lifestyle changes you can manage in addition to any drugs. My theory is do as much as you can although in practice I fall short.

    Good luck and take care.

    Comment


      #3
      I was diagnosed 10 years ago and have chosen to not medicate. I've been very lucky. I adjusted my diet, exercise, and stress, and have managed with only 2 exacerbations (each one lasted 6-8 weeks) in those 10 years. I think the decision to medicate is a very personal one, especially because this disease affects everyone to such different degrees. I wish you luck with your decision. I have wrestled with it myself several times.
      RRMS diagnosed 8/2004, no meds

      Acceptance doesn't mean resignation. It means understanding that something is what it is, and there's got to be a way through it. ~ Michael J. Fox

      Comment


        #4
        This isn't what you asked but I'll tell you my side of the story. My whole life I've been terrified of this dreaded disease. If a symptom came I would just put out of my mind. I never said anything to a doctor if my balance was off or my hands were shaking or I couldn't pee. I didn't want a diagnosis never ever ever.

        It was only when I found out that there are disease modifying drugs that I suddenly knew I had it and went for a diagnosis.i figured if there was something I could do about it I would seek a diagnosis. Still, when the MRI came back, I was devastated.

        But I wanted to get the strongest treatment possible no matter what the risks or side effects. I looked down the list of treatments and saw Tysabri 75% reductions of progression. I thought, YES!, that's what I want. Well, at that time, Tysabri was not given unless other treatments failed. So I started Avonex.

        Two months later, I got optic neuritis and a major flare that changed my life permanently. I wish so much I could have started on Tysabri. Now I go every month and have not had any more flares.

        Tecfidera does have side effects and I understand why you don't want to start it. Maybe if you went to an MS support group you could see others with the disease and decide if you want to take the risk of letting this thing progress.

        Whatever you decide, I wish you the best.

        Comment


          #5
          Hello. Whatever decision you make, there's no guarantee about getting a better outcome on these dmd/ts, and there's certainly no cure.

          But then there's blaming yourself if you don't drug up and you get worse. I've taken the drugs, and I'm still stuffed. However, it did take 13 years instead of the predicted 10.

          I figure, roll the dice.

          Good luck with whatever you decide.

          Comment


            #6
            As someone who has seen the horrific things MS can do first hand there was no doubt in my mind that I was going to medicate in an attempt to fight this miserable disease even if the efficacy isn't stellar.

            It definitely is a personal decision but I would urge you to consider there are many people who do well for 10 years or so and feel as if they are in the clear but then are hit really hard so its not over until its over, imo.

            Not that there aren't a few folks who have had it longer with minimal progression but in my experience they are very few and far between and if you actually read their stories most do have what I would consider major progression.

            Wishing you the best with whatever you decide.
            He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
            Anonymous

            Comment


              #7
              Originally posted by Jules A View Post
              Not that there aren't a few folks who have had it longer with minimal progression but in my experience they are very few and far between and if you actually read their stories most do have what I would consider major progression.
              I definitely agree with this.

              Hi Maryeve,

              I have never used any of the Disease Modifying Therapies.

              I was diagnosed at the age of 24, 29 years ago, with symptoms that go back to childhood. I was diagnosed before there were any treatments for MS.

              To date, I have never used any of the Disease Modifying Therapies.

              Have I had progression? Yes, some. My EDSS is low, around a 1. EDSS: http://www.mstrust.org.uk/atoz/edss.jsp

              Last year (2013) I was put into the Secondary Progressive category. However, I am SP without progression. This category has a very small percentage (10 percent).

              No one can tell you what your journey with MS will be with or without treatment, you can progress being on treatment or off. This disease is a crapshoot either way.

              For the most part, MS is a progressive disease.

              What I would suggest is to play devils advocate.

              If you don't use a DMT and have problems/progression can you live with a decision to not treat or will you mentally beat yourself.

              If you would not be able to cope with a decision to not treat if things got bad then your answer is to treat. If you are comfortable enough with a decision not to treat then maybe it is the way to go -- for you. It's not a good idea to look back and think "what if."

              I have never regretted my decision to not treat and have felt if I had treated I would have been worse off. But, this is a decision I made for myself and not one that is right for everyone.

              Best wishes in what you decide
              Diagnosed 1984
              “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

              Comment


                #8
                As has been said already, MS is different for everyone. For an example, my friend has been diagnosed for 14 years or so. She's had only a few relapses in that time and is not taking meds. Her relapses were not too long lasting and it's hard to tell anything is 'wrong' with her. I on the other hand have had a constant struggle for three years or so. No meds. Do all I can to stay healthy (just as I was many years prior to MS), exercise, sleep, etc. It's very obvious that something is wrong with me. I probably would have had a diagnosis sooner had I not avoided the drs and kept cancelling appointments.

                So ... my point is that it's so different for everyone. Some have a relapse or two that don't last that long and they live their lives pretty much the same as they always did. Some have daily struggles with hardly any break in symptoms and find it impossible to live their lives as they once did. And of course there are those who are somewhere in between the two.

                I appreciate reading and hearing about other's journeys. Even if there are great differences, it's still nice to know how others are doing.

                Not officially diagnosed due to non-MS-specific spots on MRIs, but the neurologists all agree it's MS.
                Frustrated. January 2019: finally saw an MS specialist worth seeing. Maybe we'll get to the bottom of this.
                EDSS of 5.5, sometimes 6.0

                Comment


                  #9
                  I was diagnosed a few years ago at age 55. My DMD of choice has been a once-a-week injection of AVONEX. So far, the disease has had an effect on my right foot/leg; weakness, pain, balance issues, etc. I would really like not to take an injection every week, but I'm afraid of what might happen. My right foot & leg issues have gotten a little worse over the years, but I don't have issues in any other parts of my body. That's why I continue on the DMD.

                  When I had to choose my DMD, the neuro gave me the names and told me to research each one before I made my decision. He didn't push one or the other. He wanted me to make the choice.

                  Good luck with whatever you decide.

                  Comment


                    #10
                    Originally posted by SNOOPY View Post
                    My EDSS is low, around a 1. EDSS: http://www.mstrust.org.uk/atoz/edss.jsp

                    Last year (2013) I was put into the Secondary Progressive category. However, I am SP without progression. This category has a very small percentage (10 percent).
                    This is a great 'proof' to my point above ... we are all different [like we needed proof for that?!]. I could not imagine having such a low edss score! According to that link, I am somewhere between a 4.5 and a 6, though usually closer to 5. And then of course there are those who would LOVE to be a 5 instead of where they are higher on the scale.

                    I've learned that we must be content right where we are. It is what it is.

                    I am happy for you Snoopy.

                    Not officially diagnosed due to non-MS-specific spots on MRIs, but the neurologists all agree it's MS.
                    Frustrated. January 2019: finally saw an MS specialist worth seeing. Maybe we'll get to the bottom of this.
                    EDSS of 5.5, sometimes 6.0

                    Comment


                      #11
                      When I first got diagnosed, we only had the CRAB Drugs. It was common practice for Neuros at that time to employ a "wait and see" approach. I went to UCSF, which was one of the very few MS Centers in the US for a second opinion. The doctors there considered me sort of an anomaly because I truly was in the first stage of the disease...normally MS is found after you have had it awhile.

                      So, I too decided to do the "wait and see" approach. I did great for 6 years...I did so good that doctors declared my MS Benign. Yes!!! I missed a bullet. I was a happy camper.

                      Two months later...Major Flare and Brain and Cervical Cord lit up like a Christmas Tree. So much for the Benign Diagnosis...I had full blown RRMS, and believe me it dropped me hard. So I went on DMDs....and yes I learned real quick how to slam a needle in my thigh. That flare took me from an EDSS of 1 to 2.5.

                      Fast forward...2012. Had to go off DMDs for a short time. Waited for Tecfidera to be approved. It got approved...and a box was sent to me. Just before I got that box, Major Flare, turned into Cyclical Flares for 6 months. Went from EDSS of 2.5 to 6.0!

                      My MS Specialist nixed the Tecfidera option and I went immediately on Tysabri. I have remitted back to an EDSS of about 3 or 3.5.

                      I have been lucky....very lucky. For me a DMD and lots of Vit D, plus a good diet and moderate exercise are the recipe for success.

                      I hope you find the right recipe for your MS as well.
                      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


                        #12
                        It took me a while before I took a drug for ms. There are some alternate therapies that have been shown to help some statistically. Fish oil, vitamin D, not smoking are big ones. There are many others. I use them, but after the rolling flares that took me from feeling well to feeling sick every day I started to also use the drugs. You now have 7 licensed drug choices. But don't rush into anything if you're not ready for it.

                        Comment


                          #13
                          If you are interested in an alternative to taking one of the MS drugs check out Dr. Terry Wahls new book which just came out this month. She is a doctor who has been treating her own MS for many years primarily through diet and has had very good results. Presently there is a clinical trial at the U of Iowa involving the diet she advocates.

                          You can find her new book “The Wahls Protocol: How I beat Progressive MS Using Paleo Principles and Functional Medicine” on Amazon for $16 or $17 dollars. Check out the comments and see what you think. Diet modification takes incredible discipline and most of us fall short. But the MS meds are no walk in the park, either.

                          You might check out LDN if you are the type of person who does their own research. Also, there are also numerous supplements which are talked about on this site. Some MSers have reasonable success with the MS meds, some with diet, some with supplements but not everyone.

                          I believe it is important to do something. Damage can be taking place sub-clinically (MRI can prove this) when no outward manifestations are apparent. Our brains have capacity to do work arounds of damage but when that capacity is exhausted RRMS turns into SPMS. So if you have RRMS you want to be actively pursuing good health in the best way possible by choosing methods and techniques fitted to you, personally.

                          Everyone can do things which will help their health… exercise, lower stress, get proper rest, have blood tested for low vitamin d levels so common in MSers.

                          To medicate or not? Congratulations on having the wisdom to study the chessboard before making a move involving the rest of your life. Keep it simple and you will do well.

                          Comment


                            #14
                            Originally posted by SNOOPY View Post
                            I definitely agree with this.

                            Hi Maryeve,

                            I have never used any of the Disease Modifying Therapies.

                            I was diagnosed at the age of 24, 29 years ago, with symptoms that go back to childhood. I was diagnosed before there were any treatments for MS.

                            To date, I have never used any of the Disease Modifying Therapies.

                            Have I had progression? Yes, some. My EDSS is low, around a 1. EDSS: http://www.mstrust.org.uk/atoz/edss.jsp

                            Last year (2013) I was put into the Secondary Progressive category. However, I am SP without progression. This category has a very small percentage (10 percent).

                            No one can tell you what your journey with MS will be with or without treatment, you can progress being on treatment or off. This disease is a crapshoot either way.

                            For the most part, MS is a progressive disease.

                            What I would suggest is to play devils advocate.

                            If you don't use a DMT and have problems/progression can you live with a decision to not treat or will you mentally beat yourself.

                            If you would not be able to cope with a decision to not treat if things got bad then your answer is to treat. If you are comfortable enough with a decision not to treat then maybe it is the way to go -- for you. It's not a good idea to look back and think "what if."

                            I have never regretted my decision to not treat and have felt if I had treated I would have been worse off. But, this is a decision I made for myself and not one that is right for everyone.

                            Best wishes in what you decide
                            Lol you were exactly who I was thinking of.
                            He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
                            Anonymous

                            Comment


                              #15
                              I'll give you my confusing take on it.

                              I have been on a DMD virtually nonstop (a few months off total between washouts, insurance delays, etc) since my diagnosis in 2008. I've taken Copaxone, Rebif, Tysabri and Aubagio.

                              When I started taking them, I had very minor symptoms, such as tingling, tremors and one arm that was a tad unreliable. I now sit at a firm 8, sometimes 8.5 EDSS with a laundry list of symptoms.

                              It sounds like they are doing nothing, but given the nature of MS, there is no real way to absolutely determine that. We play the odds of the trial stats that tell us that for most people, they do something. Some may have fantastic results, some have no results. Others will feel that with results or not, they feel worse taking them.

                              Personally, I wonder what shape I would be in if I didn't take them. They have been a rough road, but I feel that, for myself, I would regret not giving myself that chance. I decided when I started, that if I ever felt that either my DMD of choice or DMDs as a whole, were no longer completely comfortable, I would stop. For now, even with the problems I've had with them, I am still comfortable taking them.

                              The question is will you kick yourself in the butt if you don't take them and get worse? Or will you kick yourself later for taking them and having the expense and possible risks of taking them? There is no one "right" answer. People who have taken them have had both success and failure and the same is true of not medicating.

                              Of course, you also have the option many take of combining CAMs with DMDs. As always, consult with your dr about the combo to ensure there are no potential risks, but that is another option. .

                              Comment

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