Some Neuros Make DMT Choice Harder than It Should Be
More than 15 disease-modifying therapies (DMTs) are available in most high-income countries to treat multiple sclerosis (MS). DMTs come in the form of injectables, infusions, and pills. Some are new, others have been around for more than 20 years. Some have a greater possibility of serious side effects than others. Some DMTs are highly effective at slowing or stopping disease progression; others, not so much.
It’s a difficult choice to make. So, why are some neurologists making it harder? These doctors are handing their patients a medication “shopping list” and telling them to pick one. I see this topic discussed regularly in social media MS groups. Recently, a woman who needs to switch DMTs wrote that her neuro gave her a “handful of (medication) brochures” and told her to go home and decide which medication she wanted. Really?
DMT selection shouldn’t be do-it-yourself
I’ve been using DMTs for more than 20 years. I’ve been on Avonex (interferon beta-1a), Tysabri (natalizumab), Aubagio (teriflunomide), and Lemtrada (alemtuzumab). I always had the final say on which med I wanted to use, but I never had to make that decision alone without guidance from my neuro.
That’s the way a doctor-patient relationship should work. While the final DMT decision should always rest with the patient, your neurologist has the responsibility to use his or her knowledge of the meds and of you to guide you in your choice. Some factors that you both need to consider are:
- Is the disease progressing quickly or slowly?
- Your lifestyle: Do you work full time? Do you have a good support system and reliable transportation?
- If an injectable DMT is in the mix, can you handle injecting yourself monthly, three times a week, or every day?
- How much possible risk are you willing to accept in exchange for the potential of a better result?
An additional and criticial consideration is whether you can afford the treatment. My impression is that cost is rarely thought of or talked about before most physicians prescribe a medication. I see nothing wrong with asking your doctor how much you can expect to pay out-of-pocket. (Or, for the doctor’s office to ask this of your insurance company).
If you feel your neurologist doesn’t know all of these things about you I suggest that you be proactive and fill in any blanks.
The final choice is yours
With all of that knowledge, you can probably narrow down the most appropriate DMT candidates for you to three or four. Then it’s time for your neuro to clearly explain why those are the best choices and to review the pros and cons of each. Then, and only then, it’s time for you to make the final choice. And your decision might be not to use any medication. That wouldn’t be my choice, but it might be yours. After all, you’re the one who’ll be living with whatever choice you make.
What has been your experience? Was your neurologist helpful when selecting a DMT or were you given “a handful of brochures” and told to do-it-yourself? How did you choose?
You’re invited to visit my personal blog at www.themswire.com.
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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Comments
Mark
That is exactly how my neuro did it. She told my wife, who is also an MD, and I a little about copaxone and rebif. On the next visit she asked us which on I wanted. We were both shocked that she had expected us to figure it out on our own.
Ed Tobias
Hi Mark,
Did you any your wife push back at all or did you just choose from one of those two?
Ed
Mary Cadd
Sadly this is another reason that patients need to be their own advocates. I brought in a list of meds that I knew were covered by insurance. I researched each of the choices and We worked together on selecting the meds based on cost and efficacy.
Ed Tobias
Mary,
You're a "poster child" for what every patient should do...though it's unfortunate that it's often necessary for the patient to take the lead on it.
Ed
Laura
I was advised by one consultant what he would choose in his personal opinion and what he thought is the best (Lemtrada). But when visiting & seeing a different neurologist, he said for me to choose between Lemtrada or Tecfidera & I was given a booklet about all the drugs available.
Ed Tobias
Hi Laura,
There's a big difference in efficacy and easy of use between Lemtrada and Tecfidera. Did either neuro tell you WHY they thought their choices were the best meds for you?
Ed
Sherri
The first neurologist I saw who gave me the official MS diagnosis in 2006 did exactly what you wrote about, Ed. He gave me a printout of my choices, and sent me on my way. My follow-up appointment with him was one week later. I was certainly overwhelmed, but I just figured he knew I was a nurse, so I could decide on my own. Unfortunately, I don't believe that was the case after interacting with him over the course of six months. Time was important to him more than interacting with his patients. He would walk into the room, stand in the doorway and tap at his watch saying he only had ten minutes for the appointment. That routinely happened, so I think he was just 'passing the buck' when he gave me the DMD selections to choose from. I fired him, and found one of the most amazing neurologists out there after that experience. The new neurologist went over my drug choices (pros and cons) in great detail. I wish I would have had her from the beginning.
Ed Tobias
Thanks for sharing, Sherri. Tapping the watch would have sent me looking for another neuro right away. How can we get patients to understand that your original experience isn't the way DMT choices should be made?
Ed
Karen G
Great column; I hope you don’t mind a tiny correction. I only wish there were more than 15 DMT’s to choose from! Not everyone has RRMS, those of us who have PPMS have only one to choose from.
Ed Tobias
Hi Karen,
Thanks for raising a very good point. You're correct that Ocrevus is the only DMT that's approved in the US to treat PPMS. However, I know a number of people who have SPMS who are being treated off-label with meds that aren't approved for it. I'd think, 0r at least I'd hope, the same is true for people with PPMS.
Thanks for spotting that problem.
Ed
TimC
My wife has had MS for over 18 yrs. I am not at all satisfied with the DMT she is taking. SHE is however. I say pick the medication that comes with the free steak dinner and fancy presentation! That is sarcasm by the way. I let her make the decision because she is the patient. But in today's medical environment, why isn't the first question to the doctor: "Are you taking any monetary kickbacks from this drug manufacturer?" Why are drug companies allowed to pamper the doctor's offices with free lunches? Whatever happened to letting scientific progress and patient testimony (along with documented empirical research) be the focus. Drug companies should not even be allowed to give the doctors a free pen or tote bag. No doubt DMTs surely help some and hopefully are helping my wife. But why all the fluff? 6% better results than the placebo?? At least the placebo doesn't have any harmful side effects! That said, interesting article. I will be willing to learn more. Free lunch not required.
Mer
I requested PT when I thought I was doing really well, but after starting with exercises, I really have secondary progressive. So while we’re am starting in a new place, I am glad that I have taken charge of my MS. I will keep on working on excercises.