MS Drugs – Who’s Using What?
Most of us who live with multiple sclerosis also live with a disease modifying therapy (DMT) — a drug that, we hope, will positively modify the course of our disease.
One of the earliest of these was Avonex, a weekly injection into the muscle. I was one of those who participated in one of the first trials of that drug. I then continued to jab myself in the thigh for several years after the drug was approved by the FDA in 1996. How lucky all of us Avonex users felt, back then, to finally have a drug that would slow our MS progression, even though there were no obvious signs that it was the drug, rather than luck or something else, that was helping us.
It’s been some 20 years since Avonex came on the market and, since then, the DMT landscape has changed dramatically. Though Avonex is still being used, there are now oral meds and other infusions that attack our messed up immune systems. And new DMTs seem to be appearing every year. Since my Avonex days I’ve been on several other drugs, so I found it interesting to read a recent report about which drugs are “hot,” right now, and which are cooling off.
MS infusions
A survey of about 100 neurologists, taken by the market research firm Spherix, reports that the drug candidate ocrelizumab (Ocrevus) is very likely to see a lot of use by doctors. The drug is expected to be approved by the U.S. Food and Drug Administration by the end of this year, and one-third of the neurologists in the survey say they plan to prescribe it as soon as it becomes available. My own neurologist told me, a couple of months ago, that “the buzz is good” about ocrelizumab. Ocrelizumab is a monocolonal antibody that’s aimed at treating primary progressive MS (PPMS), but it’s expected to also be used to treat relapsing-remitting MS (RRMS). The researchers suggest that ocrelizumab could challenge Tysabri and Lemtrada as the most preferred infusion drug. (An article on the survey is available here.)
Oral MS meds
Oral MS drugs are seeing a lot of use. According to the research, the majority of new MS patients are being started on oral DMTs. Tecfidera is being prescribed for almost half of them. But there have been safety concerns about Tecfidera and also about Gilenya. The report says doctors are shifting away from them and toward Aubagio.
Injectables
Copaxone continues to be the leading injectable drug, even though 24 percent of the neurologists surveyed reported that their use of the drug had decreased in the past three months. Use of Betaseron is down but the introduction of the Betaconnect auto-injector device for that drug has increased use of the Betaseron by some neurologists.
Patients have a voice … sometimes
It appears that newly diagnosed MS patients are doing their research about DMTs. The report says that 1 in 5 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.
What’s been your experience about deciding which DMT to use?
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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Monica Brown
No more MS drugs for me LDN research trust, no more side effects!!!
itasara
Does anyone know at all how LDN works? I I have looked it up sometime ago, and it's rather controversial at least among neurologists in the USA. I did see a video about it sometime back and I believe it was in Sweden but not sure, and it looked extremely promising but I would like to see more research studies on this drug. I mentioned it once to my neurologist, and I think he had heard about it but didn't have anything to say about it. I know he's pretty straightforward it comes to the usual recommendations for MS. I would like to see more research studies on this drug. I mentioned it once to my neurologist and he had heard of it I believe but didn't know much about it from what I could tell. I don't think that doctors in this country usually will go out of the box when "approved"medications seem to be working. Where do you get your LDN from? Is it a prescription that you get? Just curious for my own knowledge or anyone else who's interested. Have you taken other MS medications? Did you have any specific disability or symptoms and if so did LDN make him better or are you doing as well before LDN as you are now? I would like to see more research is done with this to show the results in a statistical manner, but whether that happens in this country is hard to say. Maybe it has and I haven't heard about it.
ABDUL
hi my son is 12 years he has MS I am very worried about my son ,what I know that the MS affect the people aged between 18 and 40 ,what the percentage to attach him and what happen in future. thanks
Ed Tobias
Hello Abdul,
I'm sorry that your son has MS. You can find excellent information about the disease by reading the information posted on this web site. I'd also recommend looking at the web site of the National MS Society in the US. It has a very large amount of information: www.nmss.org. I'm sorry that it's only written in English.
Ed
Beth
Hi Abdul, I'm so sorry that your son has MS. My daughter was diagnosed with MS at age 14. She takes Copaxone 3x a week and is doing great! We thought it was the safest route for her because she has the JC Virus. She hated the thought of giving herself shots but it was not bad at all. She doesn't even use the auto-injector anymore! She is a normal kid. Plays sports and goes to college. We pray for a cure but are thankful that there is medication available. Stay positive!
Tim Bossie
Hi Beth,
Thank you for adding your daughter's experience to this conversation. We are glad she is doing good and we hope it continues!
Tim Bossie
We are truly sorry about your son's diagnosis. Ed gives some good advice, though in looking at the National MS Society website. There is a ton of information there. We would also like to say, you can browse through our own site, especially http://multiplesclerosisnewstoday.com/multiple-sclerosis-diagnosis/
itasara
Hi Abdul, I was diagnosed at age 57. I am 68 now and so far so good. I think the ages of those what you said are true but I see you I'll kinds of articles now younger children are being diagnosed as well as older adults. It could be I had it a long time but I really never knew it. My daughter was just 20 almost when she was diagnosed three years before I was. It's a disease it's very difficult to figure out and until all doctors are required to report this diagnosis it's more difficult to know how many people really have MS and what their ages are. I read something that this was going to be a requirement but I don't know if it ever passed what the story is at the moment. I wish your son the best and he may do very well and you may never have a major problem. It seems that a lot of people do have MS it doesn't get worse or progress and I hope this is the case for your son.
Jonathan
Currently I don’t use a DMT. That’s not to say I don’t put anything into my body to try and ward off the negative effects of MS, because I do. Much of what I do or don’t do is in an attempt to alleviate the ill effects of MS.
I am a 47 year old male, diagnosed with SPMS in 2012, April, right around my 43rd birthday. I knew nothing about MS. I was given pamphlets of DMT’s and told to pick one. I injected Copaxone for a year and then Tecfidera for about 9 months. I continued to progress in disability. The medical office told me my disease was active and they wanted to put me on a more aggressive treatment; Tysabri. After blood tests it was discovered I was positive for the JC virus so treatment with Tysabri never came to fruition.
My relationship with the medical office treating me has become nonexistent over the last couple years. I went on disability, stopped working, covered medical costs changed and I haven’t seen the neurologist who diagnosed me or the nurse practitioner who was overseeing me since. In thinking about a DMT to use I wish I had a doctor in whom I trusted. A doctor I could talk to about what the hell is going on in my body and what might be best to introduce into it. Until then, I trust other MS’ers, others in the MS community, friends and family.
It seems DMT’s might stop progression and are more prone to stop relapses. I don’t experience relapses, just a continual downhill slide. So until I find a doctor with whom I can communicate truthfully about my condition I will probably forgo DMT’s. Not that I wouldn’t take one, because I would, but is it really the best thing for me and my condition? I don’t know. And I have an inability to find a doctor who might assist me.
JE
Ed Tobias
Hi Jonathan,
I'm sorry to hear about your problems receiving good, medical guidance about handling your disease. Decisions about drugs, or any kind of treatment or therapy, need to follow a discussion between patient and doctor. For an MS patient, that doctor should be a neurologist. Preferably that neurologist specializes in MS. It's unconscionable for a doctor to toss some drug pamphlets at a patient and say "pick one."
The patient/doctor relationship is extremely important for those of us with MS, and I'm forever grateful to have had, for many years, a neurologist who is an MS expert and in whom I trust. I consider her a friend. I don't know where you live but there are many national MS societies around the world who may be able to help you find that kind of doc. Checking with a large university-connected medical facility may also help you in your search.
Don't give up. There has to be a doctor out there for you.
Also, check out the web site of the National MS Society in the US: www.nmss.org. It has a wealth of information.
Please let us all know how it goes for you.
Ed
Geoffrey S Maguire
Jonathan,
I appreciate your comments and know exactly how you feel. I was diagnosed 10-years ago with RRMS and have dabbled with DMT's. I have also gone your route and gone without DMT's. As Ed mentioned, I would do some research to see about getting a qualified MS Doc. From time to time, I have been very, very frustrated with MS Doc's also. Unfortunately, this seems to be one of those the onus lies with the individual. One thing to keep in mind...research and development of new therapy's seem to be coming at an ever increasing rate. I do hold on to a belief that we will "End MS". Until such time think about taking something to delay the process of this bi*** of a disease until we cure it.
Ed...new fan...pretty impressed with your story and comments
Jonathan....best of luck
Ed Tobias
Hi Geoffrey,
Thanks for taking the time to comment and I'm pleased that you like what I've written. I try to combine my journalism background with my 35+ years of experience living with MS to provide information (and, sometimes, opinion) that others might find useful.
BTW, you spell your name the way our son does. "G" is much classier than "J."
Ed
Tim Bossie
We are truly sorry to hear about your struggles with MS. It is hard enough to battle with a doctor, let alone trying to do it alone. We at MSNewsToday would recommend you take Ed's advice and try to seek out a trusted neurologist who can work with you and help you. Having a trusted doctor is much like a good friend. Have you checked any MS Society information or looked into a support group near you?
Vicki
Please keep seeking a good doctor. It makes all the difference. I finally have one who stays on top of my MS and actually listens to me. When I had to change from Gilenya because of very high liver enzymes I went in armed with the background study of what would work best for me. We sat and discussed the different mess and he agreed with which one would be best. It can take years to find the right doctor, but it is worth the effort. I have had MS since 1991 and have been through many doctors. This is the one I am keeping, the only patients he sees have MS.
Gary Brown
Is there anything out there that works on progressive MS. Any experience with rituximab. I am taking aubagio but it seems not to be doing anything and my dr. has suggested rituximab.
Ed Tobias
Hi Gary,
Yes, there is. Rituximab is designed as a cancer drug but there's been some use of it, "off label," for progressive MS. The FDA is expected to approve ocrelizumab by the end of this year for MS. It's very similar to Rituximab.
You should also ask your doc about Lemtrada.
There's lots of good info about these drugs on www.nmss.org. Search for DMTs.
Ed
Itasara
My daughter was diagnosed with RRMS about 13 years ago. She has been on a Avonex until very recently when her neurologist said she has done so well and her MRIs seem to be almost normal (This is basically what she has told us. ) She tells me neurologist took her off MS medication altogether because she doesn't need it , and Will schedule an MRI every six months and to see her neurologist to confirm progress. She's an adult and lives far away and she does not want to discuss MS with me.
I was (surprisingly) diagnosed three years after my daughter. No other close relative ever had MS and I know of. Obviously there is a inherited gene somewhere unless it's the fact that we both grew up as children in the same city. My neurologist suggested Copaxone because it has less side effects for many,and I would not need monitoring blood tests. That appealed to me except for the idea of injections but I have manage using the injector for about 10 years ( over a year now on the 3x/wk.) I would love to take something like a pill, but I read a lot about medications and I don't want to take any chances of antibody build up.
I've had the same neurologist at
all this time. I can't say I have a close relationship with him but he's OK. He feels that since I've been doing so well that I don't need an MRI and I have not had one since diagnosis. I understand from reading and talking with a neurologist on a telethon info session that this is not the standard; on the other hand once in a while it would probably be good idea but I'm just as happy with no additional co-pays or appointments; I see him about once a year now. He may end up ordering MRI when I see him soon; he made mention in the past couple appointments that it has been a while but not pressing enough to order one. From what I read, I question whether there is an overkill onthe for amount of MRIs ordered especially if a patient is doing well. I have read that the correlation between symptoms and MRI results are not always dependable. In other words, if Active lesions show up the MRI, a patientmay show no symptoms or if the MRI shows no active lesions there may be symptoms. That's what I have read and heard anyway. There still a lot of unknown information yet to learn and a lot of research that still needs to be done. I think the cost of medications is extremely high even for those who do not qualify for additional help.
Ed Tobias
Hi Itasara,
Thanks for your comments. I'm not a doctor so I can't judge how frequently you should have an MRI. I can, however, tell you my experience over the past 35+ years.
For many years I rarely had an MRI. However, the frequency increased when I began using Disease Modifying Drugs, first Avonex, then Tysabri and Aubagio. For several years I had two MRIs a year, along with two visits to my neuro. The purpose of these MRIs was as much to monitor possible side effects of these drugs (especially the Tysabri) as it was to monitor any progress of the disease.
Why don't you discuss your concerns with your neuro...I mean YOU take the lead. Ask him whether he reads MRIs himself or just depends on a radiologist's report. Ask him what he looks for in the test results. Ask him why your daughter gets MRIs more frequently than you.
As for shots versus infusions versus pills, each drug has benefits and risks. And some have greater out of pocket costs than others. You and your doc might want to review ALL the risks/costs and rewards of each and then work out a treatment plan.
Just my opinion, of course.
Ed
Itasara
Thanks Ed. Yours and others opinions do count. That's why I've learned as much as I can from a lot of these MS boards. I'm not a doctor either although I do have a nursing degree. My husband is a radiologist so when I get any kind of report although as I said it hasn't been an MRI for 10 years, I get a CD of it and he does read it. I will probably discuss this with my neurologist but as I might have said he's not the easiest person that I like to talk to. I've thought about switching but it's not that easy to find somebody take the time for another opinion. When I first got diagnosed I did go for a second opinion to the big guru MS specialist in town. It was not a good experience for me because I waited for up to two hours in the examination room, not to mention waiting a long time in the waiting room. And then he showed up made a couple comments and said yes you do have MS and then he left because he had so much to do. I never went back to him. I get along much better with my internist. My neurologist is probably good at least my Internet thinks he is. I just sometimes don't communicate ias the succinctly as he would like me to and I think he talks down to me when he tries to correct things on how I could describe what I'm trying to tell him better! I find that a little demeaning and makes me wonder how much he really understands how the brain works with MS! Although some of it is just how I operate but I would just like a little more understanding!
Mtalka
@Itasara: I am sorry to hear how your efforts to communicate with neuro doc left you with negative rather than positive validation. I agree with and enjoyed reading Ed's posts to you. Socially, the slower thought processing speeds that many of us with MS experience are a challenge. I can arrive at an appropriate answer; I just need more time to respond, which sometimes prompts some folks to try and "help" me find words. In an appointment setting, pressured by time constraints, I have developed a system where I make bullet points to guide and prompt my discussion during a visit. I have developed hand signals with family to encourage them to let me have time to talk. Feeling condescended to or diminished is negative and unpleasant. Especially when positive communication is so important and beneficial.
@Ed: I appreciate your communication and writing style. Thank you for sharing your experience, opinion and knowledge in an informative and compassionate manner.
itasara
So is an update to my last visit a couple days ago, my neurologist said that my progress of the last 10 years has been excellent. In fact I'm doing very well and so he doesn't need to see me for another 18 months unless I have a problem based on his experience with MS patients over a course of 10 years who have done extremely well and not getting worse in terms of disability.He felt that I did not need to stop taking my Copaxone because I am doing well. Still makes me wonder about my daughter who is not taking her meds/her neurologist. So I asked him about MRIs and he said for me there was really no reason to do one because he would not do anything differently. Clinically, I would have to agree with him that until there is a real reason to do an MRI but it's not gonna make a difference in treatment. I want to call your attention to an email I got from the multiple sclerosis association about a recent committee meeting in September of ECTRIMS- European committee for the treatment of multiple sclerosis. In committee met recently in London and the report was a summary of some of the studies that were done. This one in particular you might find interesting; I repost it here:
"Treatment Early in the Clinical Course----
Researchers from Sweden presented a series of 639 individuals who were diagnosed with MS from 2001 to 2007 and followed on average for 8.25 years. They found that for every year of delay in starting treatment, these individuals had a 6.7-percent greater risk in developing neurological disability. Put another way, people who started treatment three years after MS onset, had an almost two-and-a-half-times risk of developing disability compared to those who started treatment within one year from when their symptoms began. This study highlights the importance of recognizing MS symptoms as soon as possible and starting treatment shortly afterwards." You can find some of the other summaries at the website: myMSAA.org/news/ECTRIMS-2016-summary
It makes me wonder for those like my daughter who have been on medication for 13 years and then stopped, and if she were to go back on meds at some point would the above statistics also apply to her? Again so much is a known about the phenomenon of multiple sclerosis.