No announcement yet.

Should I continue DMDs?

  • Filter
  • Time
  • Show
Clear All
new posts

    Should I continue DMDs?

    I having been taking DMDs since dx in 2003. First Avonex and now Rebif.

    For the past two years my legs have been worsening. I am getting by with a walker.

    I am thinking the Rebif might not be helping anymore, but I don't want to gamble with anything stronger. Should I stop taking anything?

    I don't have a reliable Neuro. I basically go to my VA neuro to refill my meds.
    May 2003-Avonex started
    July 2007-Rebif
    Laugh than Pray!

    Hi Stacey,

    First - a thank you for your service.

    Unfortunately, none of us can really provide any medical advice, but maybe some people can share their decision to stop. I am still on DMT, so I am not much help there.

    I know you said you don't have a reliable neuro to discuss it with. Have you had any recent MRIs that show lesion activity? It could help you determine if any definitive signs of active inflammation, which is what most MS drugs try to prevent.

    If you think you may have entered into SPMS, secondary progressive MS, which may follow the RRMS, relapsing remitting MS phase, the DMTS you referenced aren't effective. SPMS is usually marked by a period of progression, with or without active inflammation. There are a few medicines approved for SPMS to try and prevent further progression that you may want to consider.

    I used to take my father to the VA for his appointments. Can you make an appointment to review your history with a VA neuro? If not, any chance you could see a private neuro for this purpose?

    I hope you get some insight.
    Take care.
    DX 01/06, currently on Tysabri


      Thank you for your service.

      Have your neurologist refer you to the Dallas SCI/D Clinic for an appointment with Dr. Olaf Stuve. He is a MS Specialist that works out of the Dallas VA Medical Center Neurology Spinal Cord Injury and Disease clinic.

      As a VA MS patient you have access to Dr. Stuve once per year. If you have transportation problems they will even send a shuttle bus to pick you up.

      If your neurologist refuses contact your VA Patient Advocate or call the Dallas SCI/D Social Worker, Jennifer Helm at 214-857-1757.


        We aren't supposed to give medical advice at MSWorld, but I believe I can give you some guidelines that might help you understand your options a bit better.

        I'm sorry you find yourself in this situation where your MS is not well controlled, your disability is mounting and your confidence in your medication is waning.

        My understanding is, you are considering stopping therapy all together since your current medication doesn't appear to be working. It sounds like you're fully aware that stronger medications exist, but you're concerned about the side effects.

        There's generally three trains of thought when it comes to MS medications:
        1. you take a less efficacious, but "safe" MS medication until your symptoms/disability worsens and then you move on to stronger medications.

          These "starter medications" will typically be the injectibles of Copaxone, Rebif, Avonex, Betaseron, their equivalents/generics or Plegridy.

          Other commonly prescribed medications are
          the orals of Aubagio (same effectiveness as the shots) then an uptick in efficacy with Tecfidera, Vumerity, Bafiertam, Gilenya, Mayzent, and Zeposia. Many people take these medications without side effects, but it's unknown how your body will respond to any of them.

        2. Some neurologists and patients break out the big guns immediately to try and prevent disability even though you may put yourself at more substantial side effect risks. This hit it fast and hard methodology is gaining traction in recent years.

          It's most common for these drugs to put a patient in a state of No Evidence of Disease Activity (NEDA). No relapses, no new MRI lesions and no increasing disability.

          Mavenclad is an entirely different oral and considering your risk aversion a chemotherapy drug would probably be ruled out.

          Kesimpta is the other injectible, but is similar in action to infusion medications Ocrelizumab and Rituximab.

          Last are the infusion medications that include: Lemtrada, Novantrone, Ocrevus, Tysabri, and Rituxan (off-label). Ocrevus has gained significant market share as a first line medication. Tysabri probably scares you, but is often used on patients with active MS after more traditional first line medications have failed. Lemtrada and Novantrone would probably be ruled out due to more aggressive side effect profiles.

        3. you either decline to take or stop taking MS medications all together

          Many people in this category prefer more holistic approaches like mindfulness, diet, exercise, removing toxins, etc.

        In your situation, you have been on two of the safer medications and have experienced breakthrough disease activity and disability progression. Most neurologists are going to recommend you go on a medication with more robust efficacy.

        There's no way to know how your body is going to respond to any particular medication. There are happy patients on *all of them and patients that stopped taking them all too. Only you can decide what is best for you.

        I hope that information was helpful, if not, just ignore it. Please ask any additional questions.

        *Bafiertam and Kesimpta are new to the market


          Great info!

          Thank you for all the useful info!

          When my walking got scary bad, I went and saw a PA at the Dallas clinic. I don't know if she is under Dr. Stuve or not?

          She put me on Ampura and she recommended a MRI. She can not order those so I sent an email to my local VA neuro and he put in an order for both.

          The MRI showed no new active lesions and and report even said less seen then my MRI about 12 years earlier.

          The Ampura helped my walking drastically after 2 weeks(I almost giving up on it). That was 1 1/2 years ago. Now my walking has regressed to just slightly better than before I took the Ampura, but since I fear the wheelchair, I will continue to take it!

          When it was time for my appointment in Dallas, at that time I didn't think the trip was worth it(legs had improved with Ampura) so I scheduled an appointment with our local VA Neuro. My old doc is gone so I guess I'll see if this new one really keeps up with MS research or if I need to go back to Dallas and pick their brains.

          My fears are PML and cancer with the more aggressive drugs, but I hate wheel chairs too!
          May 2003-Avonex started
          July 2007-Rebif
          Laugh than Pray!


            I believe the SCI/D Clinic is separate and distinct from the regular Neurology Department. You really want to see Dr. Stuve since he specializes in MS. He's better than your average VA Neurologist since he's also in private practice.

            I wish you well...