Am I Too Old for Aggressive MS Treatment?
A question raised by neurologist Gavin Giovannoni on the Barts-MS blog lit up my radar recently. Dr. G asked whether “elderly” people with MS should be treated differently than those who are younger.
The question arises because a case of progressive multifocal leukoencephalopathy (PML), a serious brain disease, was recently reported in a 76-year-old patient. According to the blog, citing Roche Pharmaceuticals, the man has long had MS but wasn’t treated with a disease-modifying therapy (DMT), in this case Ocrevus (ocrelizumab), until July 2017. His last dose was in February.
I’m 71. I’m also 18 months past my second round of treatment with Lemtrada (alemtuzumab). So, I suppose I fit the “elderly” definition, and I definitely fit into the category of someone who’s being treated with a medication that, like Ocrevus, has both high efficacy and potentially serious side effects.
Should older mean less aggressive treatment?
In his blog, Dr. G wonders whether someone my age should be treated with an aggressive medication such as Ocrevus or Lemtrada. “The question you will be asking is why is a 76-year-old MSer being exposed to such a potent immunosuppressive agent,” Dr. G wrote. “I don’t know. Maybe he had very active MS and his neurologist wanted to offer him a highly effective DMT first-line (flipping the pyramid).”
The doctor continued, “As what has happened with alemtuzumab (Lemtrada) usage in the U.S., we are likely to see a more severe and unexpected adverse event profile in MSers who are older on ocrelizumab (Ocrevus).”
Dr. G suggested that older people with MS are more likely to have illnesses in addition to their MS, immune systems that are deteriorating, and less biological reserve to deal with serious, life-threatening infections. He concluded, “I would think twice about using such a potent immunosuppressive agent in an elderly person with MS.”
Why I chose to treat my MS with Lemtrada
Were my neurologist and I foolish when in December 2016 we decided that I would begin Lemtrada treatments at my “elderly” age of 69? I don’t think so, and here’s why:
- I’d been treated with Avonex, Tysabri, and Aubagio. I hit needle fatigue with Avonex. I was treated with Tysabri as long as possible without a serious risk of acquiring PML. Aubagio became unaffordable when I hit 65 and Medicare became my primary insurance.
- I live three hours from my neurologist. Five days of infusions, followed by three days of infusions a year later, with the likelihood of not having to use any DMTs after that — ever — was appealing.
- My risk tolerance is high. When I started Lemtrada treatment at 69, how many more years would I be around? Why not shoot for the moon?
- I trust my neurologist.
Some research supports my decision
Recently, researchers at Brigham and Women’s Hospital in Boston studied a group of 195 people with MS who were 65 or older. The researchers reported that this group had a low rate of adverse reactions to the newer DMTs, and that most side effects were mild, suggesting it’s safe for seniors to use high-efficacy DMTs.
We old folks may be living with several illnesses, as Dr. G noted, and the biological reserve in our brains may be less than that of younger people. But don’t count us out when it comes to prescribing the “big gun” DMTs.
We need more research on older people with MS
According to a 2015 article in the Journal of Neuroscience Nursing, “approximately 90% of people with MS now in their 20s may live into their 70s,” and “approximately a quarter of people with MS are mature adults over 65 years old.” So don’t cast us aside.
Instead, let’s include people over 50 when pharmaceutical companies research new DMTs. Let’s also run more real-world studies of people like me so that older people with MS can have some hard risk-benefit data available when we make our treatment decisions.
You’re invited to visit my personal blog at www.themswire.com.
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Comments
Carolyn Walsh, MSN, RN
Ed, I am also 69, turning 70 in Feb of 2020. I was Dx'd with MS in Dec. of 1990. So, here I am, also needing a new DMT. I was on Avonex when it first came out, and been on Rebif for maybe 15 years, or whenever it came out.
My neuro, whom I trust, is sending me down to Univ. of Penn to be evaluated by a specialist in MS neurology.
My local neuro thinks Ocrevus would be my next line of defense. So, I'm finding your blog and your article quite timely.
Many thanks for offering an outlet,
Carolyn
Cyndi
Thank you Ed. I too, at age 63, have a relatively high risk tolerance and want to better understand my treatment options - including where those treatments can be obtained. HSCT is high on my list but think clinical research in this area does not want the “over 60” guinea pigs.
LINDA Fitch
Agreed. Older folk, like myself (turning 60) may be ready to do something altruistic for our younger suffers and take the risks so they may have a better golden year experience. I myself, have lived my life and am tired of struggling with this disease, I’d rather take the risk with the big guns medication or a new experimental treatment and live a “better life” or answer questions for research to better someone else’s better life. I did undergo CCSVI with great temporary success. But now on Medicare and being older my research study chances for participation is reduced.
Dale
I'm in a similar situation. Days away from 65 and my Nero is offering to start me on Lemtrada. I have good and bad feelings about it but going ahead with it since I'm staying on my wife's insurance. I hope my immune system is up to it.
Getty Bailey
I was diagnosed with primary progressive in 2000. Steroids for the first few years and then on to Avonex. Ran out of options in 2017. I am now 61 and quadriplegic. Fortunately my cognitive skills remain with only a bit of forgetfulness that is hopefully linked only to my age. Neurologist was not willing to even consider the Ocrevus until I submitted to a long list of diagnostic testing. MRI, bloodwork, bone density, mammogram, urinalysis,... Needless to say I didn't feel that he would even agree to the infusions regardless of what all the testing said. I wish I could get on the HSCT research train, but they have no interest in someone over 60. Now what?
Ed Tobias
Hi Getty,
I'm sorry that you were started on Avonex. It's designed to reduce flares but it's not designed to slow disease progression. Did your neuro finally nix Ocrevus for you? If so, I'd get a second opinion, because Ocrevus is the only DMT that's approved to treat primary progressive MS. I think you need to be given the ability to try it.
Ed
Karen
Thanks for this article, Ed. I, too, am hopeful for more research involving older adults. I was only diagnosed six years ago at the age of 56. My neurologist started me on Copaxone. I continued to progress on that (thankfully not aggressively), and my new neurologist put me on Ocrevus two months ago. I'm pretty healthy overall--slightly elevated cholesterol and being overweight are my only problems. To me, the side effects seemed minor compared to the benefits. My lesions are in my spine so the next one could be potentially devastating. High efficacy? Yes, please! I would gladly be part of a study and am surprised that there aren't more out there with our aging population.
Ed Tobias
Hi Karen,
In my opinion too many neuros take the go slow approach, starting people on Copaxone which is a 20 year old medicine. (Not to mention having to jab yourself). I wish you well with the Ocrevus. Don't be impatient to see results with it, but it's been proven to be a much more effective drug than any of the original "A,B,C" group of meds.
Ed
Rhonda Danielson
Ed,
Thank you for this article. Truly.
With that being said, I am going to get very direct.
I want to have a face to face, knock down, drag out kicking and screaming in the streets conversation with Dr "G", anyone else who thinks like him and every researcher, company or governmental agency that thinks like him.
People age; it's a fact of life.
Diseases and illnesses DO NOT go away simply because people get older. Wouldn't it be wonderful if I could out-grow/out live my MS?
Without life long DMTs started as soon as possible after diagnosis, I know exactly how it ends for anyone with MS.
I watched my uncle live it. He died in the late 1980's when some of the first DMTs were coming out.
He died in a care facility unable to feed himself, move, hear, see or speak. He could not even scream his pain. He was 70+ years old when he died and had lived an MS life for 40-50 years.
The idea that there were treatments available to him in the last years of his life that could have even marginally improved what time remained to him, and that he may have been denied that help because of his age, well, angry doesn't even come close to describing my emotions.
And the excuse (and that's all it is-an excuse-not a reason) for not providing a DMT because "we don't know..." doesn't cut it.
EVERY drug that becomes available via prescription is actually still in a clinical trial. This is the 4th clinical trial where we learn on a population level how effective a drug is, how safe it is and the actual dosing level.
If it is deemed safe enough and effective enough, it goes to Over The Counter availability.
The only way we are going to know the answers to these questions raised by "Dr G" and others, IS to do the studies, whether they are true double-blind studies or in-clinic observational studies because people are on the DMT.
I know what my life was like with PPMS before I started on Ocrevus. My next infusion is 12/6/19. The next 30-45 days will be a slow slide back towards that pre-Ocrevus horror show.
If anyone thinks I'm being melodramatic when I call it a horror show, well, I'm willing to video the whole nasty mess. Just tell me where to send the video.
Additionally, any neuro or PCP that withholds a DMT because someone is "elderly"; I am not questioning your licensure-I'm questioning your humanity.
Ed Tobias
I appreciate your comments, Rhonda.
I've recently become involved with the iConquerMS group, which was created to give people with MS more say, from the ground up, in research projects. One of the things that I, and iConquereMS will be doing, is working for more involvement of older folks when treatment studies are designed. Hopefully, this will translate into an understanding that these treatments are also beneficial to those who may be nearing the end of their MS road.
Ed
anon
Well said, Rhonda. And thank you, Ed, for this informative column. Wishing you both all of the best.
Ed Tobias
Thanks for your note, Anon. I appreciate your readership and hope the info I'm writing about is useful.
Ed
Cindy
Thanks for his! I feel the same way I am now 55 and not allowed to try anything because I am secondary progressive in Canada. I would love to see how Ocrovus helped you
Karen kosnak
I am n62 and have been on Ocrevus two bears this month. Got diagnosed in 1998. did Avonex a year and then Rebif 18 years. Tried Aubgio and had disaster pants. I wish they had Ocrevus when I was diagnosed. Still walk with crutches, my main problem. If I had to do it again, think Lemtrada may be the ticket. Take that chance and be done with it, because insurance dictates r treatment really.
madeline newton
hello ..i really enjoyed this but i am 67 years old and i have been on Ocrevus since 2017 and it has been wonderful for me ...i hated the needles and started with Avonex felt like i had the flu all the time and then it was Copaxone ..shots are the pits and damaged my arms and legs so bad that i had to go off of it and then it was Texadera ..spelling is a problem but i bet you know what i am talking about had to go off of it for problems with it so now it is Orevus and i love it and i know they won't cure it but i am doing things i lost back when i first started with Avonex and even with Copaxon ...i can walk around the house and a short distance and work in my yard now and the heat doesn't bother me as much so i can work outside for way more time than ever was able to do before ...so i know it is helping bring some things back and i feel so much better..so i think they are trying to limit us elderly people and i think they should maybe should be talking to a few more people that have MS and see what and how it is helping them...
Ed Tobias
I'm glad you're doing well on Ocrevus, Madeline.
I think part of the problem is with neuros who aren't well informed about the most recent MS meds, or who don't understand that even older patients are willing to take risks if the potential rewards are there. Another problem, of course, for those of us in the US is the reluctance of insurance companies to approve some of the better treatments. So, we all need to make our needs known, rather than blindly accepting less-than-effective treatments.
Ed
Leona Amerman
I was diagnosed in 1995;remitting relapsing, and have not progressed. I have very few symptoms and didn’t start any medication until 2000. I was then in a study with Avonex vs Rebif, receiving Avonex. After the study they wanted me to try Rebif to see if my results were the same, so I did for 2 years. However, i went back on Avonex as it worked out better for me. I was on Avonex until 2017 and then went on Tecfidera. Tecfidera is OK, but the flushing is really getting to me. So last month my Nero suggested I quit ALL MS MEDICINES as I am 65 and hadn’t had a flare up since 2000. Not being on medicine sounds good but I’ve always heard not to go off of them. What do all of you think about this?? And I’m wondering wouldn’t MAVENCLAD be an option?
Ed Tobias
Hi Leona,
Over the past couple of years some neuros have been moving toward stopping DMTs for older people with MS. As you know, you don't know what's going to happen if you stop the meds.
Doing well doesn't only mean not having flares. The gray matter in your brain can be shrinking, leading to cognitive problems without having an actual flare. I'd certainly ask your neuro WHY he or she thinks ending your meds would be a good thing. Also, there's no harm in asking about Mavenclad, or any of the other newer drugs. You should be in the driver's seat.
Ed
Herb L.
Ed, I am 69 years old, was diagnosed in 2007 at the age of 57. Like you I’ve been on a number of DMTs. I was finally put on Rituximab (very similar to Ocrevus) a little over 3 years ago. I can positively say that since I’m on Rituximab the progression has slowed to a crawl. Unfortunately, the drug companies don’t administer the trails with a full range of patients, because they are under the impression that older patients won’t do as well as younger ones, and they obviously are looking for the best results possible. As long as there’s money involved, I sadly don’t see this dynamic changing.
Ed Tobias
Herb,
I agree with you about the philosophy of the pharma companies. As I mentioned in an earlier response on this thread, I'm hoping that working with the iConquerMS group I can help change that philosophy a little.
Ed
Karen Powell
I too am 69 and have read that No Dr will waste their time putting me on PIPE-307 when it is available. I guess if you are over 50 people
you no longer matter. I like so many other people with MS have tried the shots and pills with little or no improvements. I never realized that as I aged my life would be considered not important.
Shirley A. Nobbs
I’m almost 76. I would like to try Ocrevus. My Neurologist said don’t know enough about it. I live in British Columbia Canada. I’ve been told British Columbia is the only province that won’t pay for it. Is that true?
Ed Tobias
Hi Shirley,
Is your neuro concerned that YOU don't know enough about it or does HE OR SHE not know enough? There's plenty of information available on which to make a risk/benefit decision. Why don't you bring a copy of my column to your next appointment? :-).
Unfortunately, I don't know whether BC won't pay for it but I'll bet someone at the MS Society of Canada can tell you.
Ed
Bill Harrison
Hi Shirley, I live in BC as well, started Ocrevus last year. I'm only 65 try contacting my Neurologist at UBC Dr.Traboulsee.
The Compass program (patient assistance program) could help with the financial portion, in your situation. Hope this is of help for you!
Bill Harrison
Bill Harrison, Vancouver BC. I was diagnosed in 2018 with
Progressive MS, 65 Years Old have been on Ocrevus for a year, had very mild side effects (headaches and sinus issues) for a few days. I would say that my experience with Ocrevus, thus far has been good. Maybe too early for any real noticeable changes or delay in my progression. I'm still above ground and very thankful!
Ed Tobias
I'm glad your Ocrevus experience has been good, Bill. We older guys deserve the best treatments as much as those who are 40 years younger!
Ed
Paul
Hi Ed,
Thanks for the article, I enjoy reading your column.
I’m in the PPMS group and on Ocrevus since it became available, it has definitely made a difference for me and to this point not much in the way of side effects from it. My opinion is that the older folks 50+ should be on a DMT if possible, I sincerely think and because of my own experience that they make a difference. I also think that we (50+) should have a chance to be involved in trials of the up and coming DMT’s if for no other reason than to help those that aren’t diagnosed yet or for the newly diagnosed. They will also be caught in this ever so tangled web of MS and for them to have the knowledge of what DMT might work for them when they get to be in the 50+ crowd in my opinion would be beneficial.
Ed Tobias
Thanks for your comments, Paul, and for your nice words about the column.
I wish you well with the Ocrevus, which seems to be effective for a significant number of people. As for patient involvement in designing trials...please check out the iConquerMS website and join us in pushing for this.
Ed
Mer
I have a friend who has transitioned from Copaxone to Mavenclad recently. Seems like a great and gentle option. Just thinking.
Ed Tobias
From what I've heard about both treatments, Mer, "great and gentle" seems a good description. I hear a lot of complaints about Copaxone. Since it's a pill Mavenclad is certainly more "user friendly" and it also seems to be much more effective than Copaxone.
Mary
I was diagnosed in 1992 at 40 yrs old. Have been on Betaseron, Avonex, Rebif, Tecfidera, now Aubagio. On medicare now. There is a copay assistance program for Aubagio. The income requirement is pretty good in my opinion. However the one side effect has me thinking about stopping it. (makes me hesitant to go out at all :o). Had to stop Tecfidera since my white blood cell count was getting too low. Didn't qualify for Tysabri since I had the JC virus antibodies. Now almost 68, and I have slowly progressed in the 25+ years, in wheelchair now. Have weekly home help, otherwise doing ok on my own. I know meds are supposed to inhibit or stop progression, but no way to know one way or the other! That is what is frustrating to me. I also take Ampyra - that is a real help to me - if I miss a dose, I can hardly move from my power chair to recliner/toilet. Makes a HUGH difference.
Ed Tobias
Hi Mary,
You're right, one of the big frustrations about MS is that you really don't know how effective your meds are - whether you'd have the same progression with or without them. On the other hand, you've seen what happens if you stop your Ampyra so....
Ed
Suzanne Hill
I just came across your article and found it to be most informative, thank you.
I was DX in 2015 at the age of 62 with Primary Progressive and since then my MS has been relentless, a beast, a runaway train. I started with a cane, then to a walker 100% of the time and now when I leave the house, which is rare, I use a wheelchair and come right home to my walker. I have major issues with my bladder, my vision is terrible, horrific fatigue and intense issues with cog-fog plus I can’t take a step without my walker. I have never been on any meds for MS itself just for all the side effects and those options are becoming more limited. About 2 years into my diagnosis the neurologist who heads up my local MS clinic told me I was too old to be treated with any MS meds and with the DX of PP I had run out of options. It was then that my MS clinic basically cut me loose and told to have a nice life as there was nothing further they could do for me.
I was left with no hope, none whatsoever. It is very hard to live yourlife without hope….hope keeps you going.
I don’t have a neurologist, just a great GP and a wonderful physiatrist who works with the MS clinic. We touch base twice a year and honestly, I think he just feels sorry for me. He also tells me it is too bad that I’m not younger because there would have options available to me as far as treatment plans.
I have begged and pleaded and I am still told no…too old!
So thank you for this timely article. Whenever I am able to see my physiatrist again I will be taking a copy of this article with me! So thank you for a little hope!
Ed Tobias
Hi Suzanne,
Thanks for your comments and I'm sorry you've had the problems you've had.
I'm not surprised that you weren't offered a DMT when you were diagnosed. Many neurologists, unfortunately, believe that someone over 60, and sometimes over 50, is too old to benefit from treatment. Of course, I disagree and, fortunately, so does my neuro. I believe that my treatment with Lemtrada, starting at 68, helped hold my progression in check and resulted in slight improvements in my bladder and bowel functions.
We're all different, of course and it appears that your disability may be more advanced than mine. I'm not a healthcare professional and I can't really judge your specific situation. Are you in the U.S.? If is so, I would ask about Ocrevus, which is approved to treat PPMS. If you're in the U.K., or elsewhere, it may not be available to you. But, it's certainly worth asking about.
I wish you the best,
Ed
Karon Cleveland
I am 71 years old, and appreciate your studies and comments made. I was treated with OCREVUS infusion for several years, and then my neurologist took me off of the treatment due to age. But I currently stay HOT all the time, blurred vision and extreme fatigue. There appears to be no new elisions. I go talk with my neurologist in a few days.