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    Multiple Sclerosis Drug Selection

    The intent of this post is to serve as a general overview for new Multiple Sclerosis (MS) patients considering a MS medication. I'm going to try to answer some common questions about Multiple Sclerosis drugs and their selection. Since there is no cure for MS, selecting a DMTis an important part of a comprehensive treatment plan. Quite often this process is one of trial & error and you might start down one path and end up entirely somewhere else. This guide is intended to help in the DMT selection process so some of the language may be assumptive in nature. Many patients elect not to take DMTs with varying degrees of success.

    What's in a Name?
    Some people call them CRABs (Copaxone, Rebif, Avonex, and Betaseron) drugs, but the term is certainly dated. Some people call them DMDs sdisease modifying drugs) and the most current and hip term is DMT or disease-modifing therapy. There are other terms used as well, but they all describe drugs whose purpose is to try to help your body fight MS. So similar to using "aspirin for a headache" you use "DMTs for MS."

    Forms of MS and their Medication Impact
    As of today, all MS drugs are available for patients with the Relapsing Remitting Multiple Sclerosis (RRMS) form of MS. RRMS is the most common form of MS. If you were just diagnosed, your neurologist most likely diagnosed you with RRMS even if they did not stipulate. RRMS basically means you will have exacerbations (or flare ups) followed by periods of remission. Remission doesn't mean you won't have any symptoms, but will be limited to just your daily symptoms. During a flare up a neurologist may add a high-dose short-term medication to your treatment plan.

    Most neurologists will continue to use all DMTs for Secondary-Progressive Multiple Sclerosis (SPMS) and Progressive-Relapsing Multiple Sclerosis (PRMS), but may favor infusion-therapies over either injectibles or orals. There are currently no MS drugs approved for Primary Progressive Multiple Sclerosis (PPMS), but a neurologist may continue to treat with DMTs or other medication.

    What Do the CRAB/DMD/DMT Drugs Do & Don't Do?

    The MS drugs are designed to PARTIALLY:
    reduce the number and severity of relapses
    reduce or prevent new lesions
    reduce disability progression
    reduce further damage
    The MS drugs are NOT designed to:
    completely prevent new lesion development, flare ups or disease progression
    treat your daily MS symptoms. Complimentary medications are used to treat symptoms
    help you feel better (in fact, being on a DMT may make you feel worse)
    are not a cure

    Note: If you have a flare up or new lesion while on a DMT it does not necessarily mean your DMT failed. Each drug provides only partial protection or varying degrees, each patient will respond differently to different medications and there are more factors to consider than just your DMT. A DMT is not like a light switch where 100% protection is attained simply by flipping the switch to ON.

    Am I Required to Take a DMT?
    In the end, this is your body and entirely your decision whether you will take a DMT or not take a DMT. The National Multiple Sclerosis Society suggests the earlier you start on a DMT the better your prognosis will be. In some cases, they even recommend starting a DMT prior to an official diagnosis of Multiple Sclerosis. The basic theory is the DMT will not cause harm that exceeds the potential benefits of the medication. This is similar to a safety belt in an automobile where using it is HIGHLY RECOMMEND ultimately you have to be the one that uses it. (note: Safety belts may be required in some locations, but the use of DMTs is not.)

    What DMTs exist?
    Injectible-therapies: Glatiramer acetate (Copaxone), Interferon beta-1b (Betaseron or Extavia), Interferon beta-1a (Rebif), Interferon beta-1a (Avonex). So basically your choice is Copaxone or one of the flavors of Interferon.
    Oral-Therapies: Fingolimod (Gilenya), Teriflunomide (Aubagio), Dimethyl Fumarate (Tecfidera)
    *Infusion-Therapies: Natalizumab (Tysabri), Mitoxantrone (Novantrone), Rituximab (Rituxan), Alemtuzumab (Lemtrada (formerly Campath))
    * The infusion therapies are normally not considered for newly diagnosed patients.

    Which DMT is the Best?
    When you are first diagnosed your neurologist may hand you a stack of pamphlets and tell you they'll expect your decision at your next appointment. Other neurologists may tell you they want you to start on a specific medications while others may not mention it at all.

    It's not uncommon for a neurologist to have his favorites or "go to" drugs or for patients to defend their own DMT as the best. There are far too many variables to have a single "best" DMT for everyone. You really have to consider a number of factors, become educated and make your best "guess" as to what medication to try. It's very common to start on one medication and switch later even multiple times (this is why medicine is "practiced").

    So if there is no single "best," how do you decide?
    I think the most important factor is for you to become your own patient advocate. Educate yourself and become an active part of your health treatment plan. If you depend on other people's research or opinions you may miss out on the "best" treatment for you.

    Below is a non-exhaustive list of factors you may consider as you begin this journey:
    1. Are you trying to get pregnant? This may be the single biggest exclusionary factor. If you are or are tyring to get pregnant you need to IMMEDIATELY tell your neurologist.
    2. What other diseases or disorders are there to deal with? If you already struggle with depression, liver problems, or other scenario this may reduce your medication options. Please discuss this with your neurologist.
    3. What other medications are you taking? Some medications used in conjunction may have dangerous or unwanted side effects. Please ensure your neurologist has a complete and current list of your medications at all times.
    4. What is your tolerance for needles and the potential sight of blood? Even people that are "afraid" of needles can do well on the injectibles. For select people, the sight of a needle or blood may be a non-starter and this may preclude your use of the CRABs.
    5. What is your risk tolerance? Do you want a medication that has been on the market for a long time and is "tried and true" or do you prefer the "new & shiny" lifestyle even if the long-term risks may be unknown?
    6. How active is your MS? You may not know this, but if your MS is controlled by one of the first-line drugs you may want to avoid the risks of one of the more potent ones. For example, if my MS had little impact on my life and I was using Copaxone I would probably stay on that medication until I was forced to switch to something else. Just because a drug has a higher statistical efficacy rating it doesn't mean it will work better for you. On the other hand, if MS has reduced your quality of life to nil, you may want to consider something with a more robust reputation. Your neurologists should help steer your decision if you make a selection out of sorts.
    7. How does a particular medication fit into your lifestyle? Are you working? Have kids? What side effects are you willing to accept? Each medication comes with it's own common and less common side effects. If a particular side effect is a non-starter for you then you may need to avoid a particular DMT. Some medications require refrigeration, while others require routine monitoring and some require regularly scheduled in-person infusions. A number of medications carry a small risk of developing a potentially fatal brain disease.
      Examples: An airline pilot may decide to avoid interferon therapies because the "flu-like" symptoms may pose a flight risk (in your estimate). A fashion model may avoid injectibles due to potential visible injection site reactions. A salesperson that travels frequently may not be able to regularly schedule infusions so they opt for something more portable.
    8. The financial impact to your budget. In a perfect world money would grow on trees and we wouldn't have MS, but drug costs do matter. MS medications are typically several thousand dollars (USD) per month. You may find your insurance plan covers one medication at 60% and another at 95%. A particular drug company may completely cover the costs of your medication while another may charge you a substantial monthly co-pay. Unfortunately, you may select your "best" medication only to discover the financial cost is not acceptable.
    9. How quickly do you want protection? Enduring harsh start up periods?
      Many people have started on Copaxone and then get upset when they find out the bulk of a year will pass before they reach the maximum benefit effect. Many people experience harsher side effects when they begin a medication and then they gradually decrease over a period of days, weeks or months. Properly setting your expectations goes a long way into the successful adopt of a drug into your lifestyle.
    10. Pharmaceutical Support
      Each company markets and supports their own medication(s) with a website, nurse line and other programs. With some companies they may even assign you a one-on-one peer counselor. Visiting the website of your perspective medication or seeking others opinions may help you decide what drugs to consider or avoid.


    There are an infinite number of other considerations, but hopefully the above list will help you narrow down your selections. I personally made a list of all the medications, immediately ruled a few out and then created a pros & cons list for the remaining medications. There are more choices today than ever so your homework assignment is getting bigger.

    I hope you found this informative and helpful. I am sure that the responses to this thread will be more interesting and intelligent than anything I typed. I am not a doctor, nor do I claim to possess any medical or other knowledge. Please let me know if there are substantive errors in need of correction.

    #2
    Marco: Thanks for this. You did a great job. I think it was something that was missing in our site and hopefully it will be read by those that are recently diagnosed and about to start a DMT .

    Take care
    Lisa
    Moderation Team
    Disabled RN with MS for 14 years
    SPMS EDSS 7.5 Wheelchair (but a racing one)
    Tysabri

    Comment


      #3
      Thank you so much for this, Marco. I'm going to print it out just in case I need it in the future.

      Comment


        #4
        I begin my treatment selection process tomorrow. Thank you very much for this post.

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          #5
          Great summary

          Marco,

          Fantastic summary of the Ups & Downs and the Ins & Outs of the DMTs, especially the Dos & Don'ts. Good job!
          RRMS since July 2010.

          Comment


            #6
            Well done, Marco! Could I add the following video of Dr. Vollmer discussing all the drug options with pros and cons for each? I still watch it periodically just for the information.

            http://www.youtube.com/watch?v=iMycnR3ROQo

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              #7
              Thank you so much. Great information presented in easy to understand terms. You put forth great effort and I appreciate your time and talents.
              "Your task is not to seek for love, but merely to seek and find all the barriers within yourself that you have built against it." ~~Rumi

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                #8
                Thank you Marco! I moved this to the Medication & Treatment forum and made it into a sticky.

                Bless you!
                1st sx '89 Dx '99 w/RRMS - SP since 2010
                Administrator Message Boards/Moderator

                Comment


                  #9
                  I'm glad some of you are finding the information useful. I just reread it and found the grammatical and spelling errors frightful. They need to invent a better spell checker!

                  ru4cats - thanks for the link. I had not seen it yet.

                  I wish you all well ...

                  Comment


                    #10
                    Great post, Marco. You answer many questions I have seen posted, on this site, before. Good luck

                    Comment


                      #11
                      Thank you

                      Thank you Marco! I printed it out for reference ..It's 5 pages...thanks for all the work!
                      Susan......... Beta Babe since 1994....I did improve "What you see depends on where you're standing" from American Prayer by Dave Stewart

                      Comment


                        #12
                        You are an asset to ...

                        Thank you so much Marco ... You are an asset to MSWorld.

                        Your discussion on meds and treatments was a world of information for me. I decided against DMD's for reasons of confusion.

                        You helped me with my confusion on how DMD's might and might not help me with my personal struggle that is unique to me.

                        I am sure that you will find that others will be just as thankful for your time and effort in explaining and helping others out with their personal journey and decisions.

                        God Bless you Marco, for you are truely an asset to MSWorld.
                        STR

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                          #13
                          Thank you so much for this information. I've been on Avonex since diagnosed in October, but a new insurance started in January that does not pay for Avonex. They do pay for two others and I knew nothing about either. This helped a lot - so glad I found this! Thanks!

                          Comment


                            #14
                            Thank You Marco

                            Thank you Marco for the summary of DMDs
                            My diagnosis is SPMS and I believe no DMDs at all are approved for progressive ms. Am I correct?

                            What is your opinion of Mabthera ?

                            Tomas

                            **Moderators note: Do not post personal information**

                            Comment


                              #15
                              Excellent piece Marco! Thank you.

                              A hard copy should be posted in my neuro's waiting room.

                              It contains more info than he has given me in 7 years.

                              Jer

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