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Newly Diagnosed: How to choose DMT?

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    Newly Diagnosed: How to choose DMT?

    Hello all,
    I was just diagnosed on 7/08/14 at the hospital. I have lesions on my brain and lumbar. I was placed on methylprednisone for 5 days and by the end of treatment I had experienced all the side effects. I thought my MS was progressing and I was dying. Sorry to sound dramatic but being that I was just diagnosed I had no idea what was happening.

    I had severe nausea, headache (also could be attributed to the LP), anxiety, crying bouts and palpitations with extreme difficulty breathing. The hospital did the first 2 days of treatment and they paid for a nurse to come to my home to finish. That was great because I was allowed to go home.

    Now, I'm faced with this question of which DMD will I choose. I'm afraid of the side effects robbing me of enjoying my life with my family. My children are young and I'm engaged to be married next year. My partner is one of the most caring supportive men I have known. I want to be strong enough to carry on my life.

    Also, to add to my situation I broke my ankle from a fall on 7/4/14. That's what lead to me being tested. Some of my symptoms have been dizziness, spasm in my arms and legs, and numbness that has gotten worse. I'm also very fatigued. Could you share with me your symptoms and meds? Also what have been the side effects of your meds?

    ** 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. **
    Dx MS (RRMS) 7/14
    Dx Myastenia Gravis 8/14
    No treatment selected yet

    The first thing to keep in mind is that not everyone suffers side effects. I heard one horror story after another about the side effects with Avonex & I get none of them. Literally. I started with titration (gradually increasing the dose) and I never got a single side effect and have been on it now for over 2 years.

    I made my decision because I hate needles. Giving myself a shot caused me the worst anxiety. The doctor informed me that Avonex had a pen out and you would not see the needle, push the button & it gives you the injection and it was only 1x a week as opposed to more than that. Sold!

    It's a personal preference & if you suffer bad side effects, the doctor should be willing to try you on another. There are oral options out now as well.
    Diagnosed: May 2012
    Medications: Avonex - stopped 12/14
    Plegridy - starting 12/14


      That's amazing that you never suffered any side effects. I think I'm coming to terms with everything and I'm willing to try the treatment and do what it takes for me to avoid relapse. I really appreciate you sharing with me.
      Dx MS (RRMS) 7/14
      Dx Myastenia Gravis 8/14
      No treatment selected yet



        I'm on Tysabri, but I check other forums occasionally, and I thought I'd offer some ideas. Hope you don't mind.

        For me, the choice of Tysabri was a no-brainer. Why would you NOT start with the most effective drug currently available?

        I will add that you don't say how old you are. The younger you are, the greater the chance that Tysabri will provide your body with the opportunity to heal. If you search YouTube for "The Future of Multiple Sclerosis treatment" you'll see a presentation by Dr. Vollmer of the RMMS Center in Colorado. He gives an overview of all the drugs and provides wonderful information you might find helpful.

        Our bodies have excess reserves that can be used to repair damage. However, as you age, these reserves are depleted, and in my case (diagnosis at 58.5), my reserves were gone. My neurologist felt Tysabri would provide me with the best opportunity to stop progression, not necessarily the ability to heal. This has been the case. The damage done before diagnosis continues to progress, and the normal aging process hasn't helped.

        I've had NO side effects from the drug, much different than the CRAB's and the orals. My months are all now 28 days, with day 1 just like day 28. Yes, PML is out there, but almost 10 years after, once again, being offered, much has been learned and monitoring can really lesson the risk if JC positive. Even 18 months of infusions will provide your body with some time to heal.

        Tysabri, cost-wise, is pretty much in line with the other DMD's. I did find hospital infusion sites are much more expensive that smaller, private ones, so check around for the best price. Mine are billed at just under $5500.

        Enough said. Good luck with whatever DMD you choose


          Originally posted by ru4cats View Post

          I will add that you don't say how old you are. The younger you are, the greater the chance that Tysabri will provide your body with the opportunity to heal.

          Enough said. Good luck with whatever DMD you choose
          Thanks for posting in this thread. I am 32. The Neurologist I saw was really pushing for Copaxone. He mentioned risks and flu-like symptoms that may never go away.

          Do you experience the flu-like symptoms?
          Dx MS (RRMS) 7/14
          Dx Myastenia Gravis 8/14
          No treatment selected yet



            You are so young, you are the ideal candidate for Tysabri! It offers the most potential for recovery, and I have seen it myself with others at my infusion center. The infusion nurses consider it a "miracle" drug for so many. As for me, it's given me what I could ask for at my age.
            I have NO symptoms, nada, ziltch, from this drug. As I said, day 1 is just like day 28. I walk into my infusion feeling just the same as I walk out. I knew in my heart-of-hearts I just couldn't do the "shot" thing, and being sick from a drug didn't seem like a place I wanted to go.
            Tysabri is now considered a 1st line drug, so your neurologist should consider it. However, watch Dr. Vollmer if you haven't and make the decision that you are comfortable with. He is really straight forward with his feelings on each drug.


              My Two Cents. . .

              I've been self-injecting Avonex since September 1997. I was dx in 1994 (just turned 26 yo) and was blindsided. No DMD's back then (Betaseron was rx via lottery as first new tx). Diagnose and adios (and cross your fingers).

              Three years later another flare sent me back to the neuro. My follow up MRI showed lots of "silent" disease progression and my neuro told me I was "lucky three times" as the new lesions hit mostly silent spots. He ordered I start Avonex as soon as possible (Avonex hit US market 1996)!

              Needless to say, I was scared silly! I'm a HUGE needle weenie and the thought of giving myself intra-muscular injections weekly really freaked me out, but the reaction from my neurologist freaked me out even more.

              Sure, I had to mix up the Avonex back then (powdered form) and I didn't even tirate the dosage (so glad you can do that now) as the first three months on Avonex were quite difficult from the side effects. I was in bed all weekend from the flu-like side effects (fever, chills, aches, etc.). But, advil and time (after three months) things got better.

              My anxiety levels increased but Effexor XR helps me maintain balance. Now, I inject the pre-filled syringes. Although I am still a huge needle weenie, I still self-inject weekly. I'm scared to try the auto-injector (you'd be surprised what you get used to. . .).

              Sure, having a MS dx isn't so rosey, but thankfully today we have tx OPTIONS! If one tx isn't working or after time you simply cannot tolerate the side-effects, you can switch tx options. DMD's are the silver lining in the MS cloud!

              Twenty years later, I am so thankful for Avonex (and the other tx options). My neuro actually apologized to me a few years ago about the "diagnose and adios" thing as "wait and see" was pretty much the standard thing for young women just dx with MS. He put on a positive spin, but twenty years in I get it now!

              I've stuck with Avonex for more than twenty years. I've had a few mild relapses (1 - optic neuritis five years later & 2 - ten years later left side numbness) but my MRI has been stable (I see my neuro every year and MRI every year now as MS knowledge has progressed with new treatments). I am thankful that I have an option and thankful that I was "scared silly to stick out the tough times" to maintain tx.

              Treatment adherence is critically important! Finding your option and sticking with it takes time and patience and practice!

              I wish you much luck as you begin your journey!
              Life isn't about waiting for the storm to pass; it's learning to dance in the rain!


                Hello WithGrace,

                I'm sorry to hear about your experiences, but I can totally understand and you do not have to worry about sounding panicked (I think many of us have been there!).

                As for medication, it is really a hard choice to make. My neuro told me all these options and I was really unsure what to make of these. My personal choice would've been Tsysabri, but since I've got that one virus they test you for, I chose not to proceed with Tysabri.

                To decide which meds to take I went to a support group near my university (I don't know if you guys have that in the US, but here in Switzerland we do in the major cities) and they showed me all the possibilities in detail (with the test pens and whatnot).

                I finally chose Avonex because it was the one that seemed least invasive: once a week and since it's into the muscle, you'll hurt less than if you take Rebif, or one of the other meds that are not shot into the muscle. Also, my skin is super sensitive and I didn't want there to be hardening of the skin.

                I have been using the non-prefilled syringes for a year, but I've recently changed to the pen, and it's working wonderfully. As for side effects: Most of the time I don't feel anything and since I take it Friday nights I just sleep the most of it off till Saturday. I'm usually just a bit careful about strenuous activities on Saturday, but even so most of the time I have no problems doing anything. I might get tired, I might get a little feverish, but those days are seldom

                I hope this helps you and even if you don't choose Avonex, that you'll find something that fits your lifestyle. I'm glad to hear you have a supportive husband-to-be and wish you the best of luck!


                  I have been on Gilyena for about 5 years now and been very happy. No needles and no appreciable side effects.

                  Tysabri is good but when I was first DX I had high deductible health plan and would have had to shell out 7500 bucks before insurance paid anything. Gilyena I was on a clinical trial for so got it free. That was the major deciding factor for me.

                  It has been a good decision long term I think.
                  Rise up this mornin, Smiled with the risin sun, Three little birds Pitch by my doorstep Singin sweet songs Of melodies pure and true, Sayin, (this is my message to you-ou-ou


                    With Grace,
                    I'm going to have to comment on the Copaxone. I was on it for 2 years and had very few side effects. I switched due to the refrigeration and daily injections. It was somewhat inconvenient. I did end up with some pretty significant lipoatrophy on my legs and arms. Not everyone has this side effect. As a young women, you may want to consider this. I realize it is cosmetic but it is a lasting side effect.


                      You can always switch

                      Grace -

                      Also realize that making a choice now doesn't mean that you have stick with that option forever. You can change if it doesn't suit you.

                      I chose Betaseron because I was traveling a lot to places that didn't have electricity, and Beta was the only option at that time that didn't have to be refrigerated.

                      My flulike symptoms: for about 6 months, I'd get a little bit of a funny feeling in my throat about 18 hours after the injection sometimes. You know that feeling as if you're going to get a cold? It would last no longer than 30 minutes. At some point, I realized I hadn't had it in quite some time.

                      Ty wasn't an option in my mind. Why start with the sledgehammer when you only have to put a thumbtack in the wall? Besides, with travel to the Equator, where there are all kinds of tropical diseases to catch, Tysabri was too scary to me. Yes, I knew about Ebola 15 years ago, and I am NOT in any of the health fields!

                      I'll be switching to Plegridy in two weeks as part of a study, mostly because I was happy to have my medication supplied for a whole year without having to file paperwork and make phone calls. My insurance has changed several times over the last year, so the paperwork has just been a hassle. Right now I'm on Medicaid, but I'm right at the maximum income, so if I earn any money at all, I have to change insurance again. Bayer has been great about getting me the medication without a copay through all of this (graduation, contract job, unemployment). But I'm just worn out from the paperwork.

                      So there are lots of reasons to make your choice, and they are all valid. Don't let anyone make you feel bad or silly about your choice, because you're the one who has to be compliant for a medication to do any good.


                        I too developed lipoatrophy all over my butt from Copoxane (last fall - immediately stopped the medication). For people that developed lipoatrophy years ago - has it gotten better with time? Worse? Stayed the same? Am looking into a BBL fat transfer as I am completely distraught.


                          Coming into this thread late. Grace, do you have any updates for us?
                          ~ Faith
                          MSWorld Volunteer -- Moderator since JUN2012
                          (now a Mimibug)

                          Symptoms began in JAN02
                          - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                          - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08

                          - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                          - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.