Pills, Shots or Infusions for Your MS?
Oral multiple sclerosis meds appear, more and more, to be the first choice of patients who are just beginning to receive an MS treatment. A recent report by the independent marketing research firm Spherix Global Insights shows that oral disease-modifying therapies captured a significantly higher share of the market at the end of 2016 compared to 2015, with Tecfidera at the top of the list and Aubagio gaining ground. But, final FDA approval of the infusion drug Ocrevus (ocrelizumab) could be a game-changer.
Neurologists and many MS patients are very familiar with Ocrevus. There’s a lot of chatter about it in online MS gathering spots, and many doctors report they intend to use it as soon as it is approved. And, even though most of the “buzz” is about prescribing Ocrevus for PPMS patients, it’s expected that a lot of doctors also are looking at it for those with RRMS. It could push ahead of other infusions, such as Tysabri and Lemtrada. as well as oral meds such as Tecfidera and Aubagio. Spherix reports more than one third of the neurologists it surveyed said they would have been likely to have started patients on Ocrevus, rather than on Tysabri, had it been available.
What drives these drug decisions? According to a Spherix report RealWorld Dynamix™: DMT New Starts in Multiple Sclerosis, the drivers include clinical considerations such as safety and efficacy, as well as non-clinical concerns including patient requests and the policies of the insurance coverage of those patients. Interestingly, it appears that neurologists are becoming more comfortable using high-efficacy DMTs right away for patients with aggressive MS, rather than working up to them from drugs with lower efficacy, but lower risk or cost.
As the patient you should take an active role in your drug selection. A Spherix report released last fall showed that newly diagnosed MS patients are doing their research about DMTs. One in five of them are asking their neurologists about specific MS drugs. Those doctors say that 27% of their patients have a high degree of involvement in choosing the DMT they will use, 43% have moderate involvement, and 30% only low involvement. Unfortunately, more than 50% of the neurologists surveyed say that they, alone, choose the DMT the patient will use. About a third say they present a few choices, and then let the patient decide. Only 10% of the docs say they present all of the options and then let the patient decide.
How did you decide which DMT to use? Are you thinking about changing?
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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Tammy
I was given 6 treaments to choose from in a folder w/information on all. He recommended going with one of the three injection therapies. I chose Plegridy and have been on for 4 1/2 months.
Ed Tobias
Thanks for the info, Tammy. Would you be willing to share what made Plegridy the drug that you chose?
Ed
Melissa
Tammy, how did the drug affect you and the disease? I've been fighting RRMS for 12 years and always looking for a better treatment.
Candy
I was told by the MS Specialist I went to what drug he wanted me on as my first DMT—Aubagio. When I expressed dislike for Aubagio I was basically told “too bad”. The clear impression I got was that it was the Aubagio or nothing. So rather than be left with nothing—I accepted it. Now every day I choke down what I consider to be an inferior DMT and one which I have no faith in, whatsoever. I feel hurt and disrespected.
Patients deserve and need to have a voice in the choosing of their drug therapies. Dammit, we’re the ones with the disease and the ones at risk from the drugs. If it’s not the right one—we’re screwed. I’m so unhappy with the situation I was put in. But I can’t afford to go anywhere else now.
The thing is, for all I know, Aubagio is the exact right DMT for me to be on. But I’ll never believe it thanks to my dictatorial neurologist who doesn’t believe in “shared decision-making”.
Ed Tobias
Hi Candy,
You're absolutely right about everything you say.
You're not alone in having this problem. I wrote couple of columns about this:
http://multiplesclerosisnewstoday.com/the-ms-wire/2017/02/10/ms-docs-communicate-patients/
http://multiplesclerosisnewstoday.com/2018/12/07/ms-care-patients-these-doctors-have-right-idea-but/
If you can find a way to go to another neurologist I'd hustle to do it. It's your body...your life.
Ed
Tom
My choice of DMT was rituximab (same target as ocrelizumab) from a clinical trial 5 years ago. After the trial, I got my neuro to prescribe injectable cladribine off-label. My insurance didn't cover it. For a number of safety and efficacy reasons, I think that cladribine will prove to be the better drug for MS patients.
Andy
Can you give me the name of your doctor?
Karen Morton
Hi Ed, I was diagnosed with RRMS in the U.K in1994 and chose to be drug free for years as the injectable drugs, in my opinion, were still in the experimental stage. In 2003 I tried Copaxone and Betaferon for a few years but hated injecting myself. After a time using Rebif, which was an easier way to inject, I am now taking Aubagio oral medication as suggested by my neurologist as he knows how much I hated injections. I now live in Australia.
Ed Tobias
Karen,
I totally understand about self-injecting. I was in the original Avonex study and continued on the drug for many years after it was approved in the U.S. One day I hit a wall and could no longer stick myself. My wife took over with my weekly shots for a couple of years but then I couldn't stand it any longer and kept trying to avoid the shots. I switched to Tysabri, preferring a monthly infusion to the weekly jab. After my tider levels increased I moved to Aubagio. Then I went to Lemtrada.
I don't know about Lemtrada yet but all of the other therapies worked for me. I'm grateful to have had so many DMTS from which to choose.
Karen Morton
Hear, hear, me too. Taking a pill a day (Aubagio) is an easy way to keep on top of my MS and satisfy my neurologist that I'm on appropriate DMD.
Judy
Just wondering how much you, or your insurance, pay per month for aubagio in Australia.. I was shipped my first 28 tablets and it says it costs over $6,000 in the US.
Mary Holmstrand
So what stands out for me is why would not EVERYONE be offered "high efficacy" treatment right away?? And who determines the definition of "aggressive"? Give me a beak. There are no consistent clinical treatment protocols for this dz. The neuro community has dropped the ball. Would you show up with a diagnosis of "breast cancer" to have a doctor prescribe "a less effective yet safe treatment"? Or let them tell you to "come back when your tumor is larger then we can give you the more effective treatment". Well that in essence is what is happening without standard clinical guidelines and not offering the "most effective" treatment as first line therapy. The MS community should be outraged since this borders on negligence.
Ed Tobias
Hi Mary,
Breast cancer and MS are two very different diseases. MS comes in many forms and levels of aggressiveness and a treatment that is appropriate for one patient may be totally inappropriate for another. A good friend, for example, was diagnosed about 15 years ago and has not yet begun using a DMT. After weighing the risks vs benefits for her, and the way MS is effecting her, she and her neurologist believe that's the best path for her. I can't argue with that.
Ed
joan quilter
I find it very odd that no one mentions side effects. This latest drug called Ocrevus has serious side effects.
Ed Tobias
Hi Joan,
All DMTs have side effects, though some are more serious than others. Obviously, they have to be taken into consideration when assessing the risks versus the benefits of each drug. MS is a very unique disease and, IMHO, there is no single "best" therapy. What works for one may not work for another.
I'm very glad that we have so many choices.
Ed
Dorothyanne Brown
I've been on Copaxone for 8 years now and have been repeatedly told it is very safe - and I'm sure it is. I don't know if I would have been in my right mind to decide whether to take the more aggressive drug when I was first diagnosed. On the one hand, it might have meant I could work for longer. On the other, it might not have and it might have killed me.
When I was first diagnosed there were only the three. Fortunately my MS is taking me slowly, brain cell by brain cell, so I can stay on the safe one. But when I was diagnosed I thought my world had ended )which it had in many ways). I might have chosen the stronger pills in my despair. And not needed them. I do wish the docs would give us a bit more direction re this decision as they have seen many patients...and not all of us have access to the databases.
Ed Tobias
Dorothyanne,
You bring up a very good point. We, as patients, need to be as aggressive as we can be in questioning our doctors about the treatment they prescribe. Are there are other choices? Why are you recommending this one for me? What are your other MS patients using? And the treatment should be reviewed each time you visit that doc. The best choice today isn't necessarily going to be the best choice tomorrow.
Ed
Wehbe Sayyadi
Well, several types of MS with a variety of medicines; but none is perfectly confirmed which medicine better suits a certain type of MS. From my experience, since each body reacts differently. Since the reason for MS is still unknown yet, then the whole issue of medicines is still in the trial stage for each individual. More funds from governments are required to increase and speed-up the researches on MS. So far, MS is a peculiar and trick disease but we should not lose hope.
Ed Tobias
Yes, MS is unique to each person. So, a treatment that is appropriate for one patient may not be appropriate for another. That's why it's important for someone who has MS to be familiar with the many treatment options and to discuss them with his or her neurologist. This discussion must include the risks, benefits and cost of each of these treatments.
Ed
Kondra Snell
My husband was diagnosed a year ago and is on Ritaxumab it works great for his syptoms. When it gets close time for his infusions his syptoms start to come back. As soon as he gets the infusion the syptoms leave instantly. I just want to know the long term effects of the infusions.