46 Comments
Sep 25, 2021Liked by Gavin Giovannoni

I’ve found this newsletter really depressing as I’m one of those people who wasn’t prescribed a DMT for several years. I wasn’t having relapses, but I did have optic neuritis on one occasion. (at 40) So now here I am at 64 - I’ve been told that there’s no point in taking Tecfidera anymore- my latest MRI shows that the ms is inactive (doesn’t feel like that!) So no other option but to wait until I shuffle off this mortal coil! I’m usually a very optimistic person but it’s hard to remain so, when your options are so limited. 😢

Expand full comment
Sep 25, 2021Liked by Gavin Giovannoni

I am in a similar situation to Kit, previous poster, except that I have requested siponomid, have had mri and am awaiting appointment. Had 2 relapses in 20s, nothing for 30 years but SPMS diagnosed in 50s as slowly deteriorating. What more can people in our situation do (also volunteer for trials, most recently Sizomus)? Feel I missed the boat in terms of DMTs because of timing!

Expand full comment
Sep 25, 2021Liked by Gavin Giovannoni

Given what we know now watchful waiting (with very rare exception) should be considered malpractice

Expand full comment
Sep 25, 2021Liked by Gavin Giovannoni

This is a timely and useful series of questions and answers. I do wonder about “ageism” though.

When you say you don’t “agree with this,” are you referring to a) denial of treatment given the current state of knowledge, b) arbitrary denial based on age alone, or c) the scarcity of RCTs investigating the use of DMTs in older pwMS?

I’m 71 and use a wheelchair (EDSS ~7.5). I was diagnosed with MS at age 55 and free of disability until 60 - waiting under watch, I suppose. I was then on glatiramer acetate for 18 months, followed by natalizumab for 12 months, until a JCV test came back positive. My neurologist, a 25-year MS specialist whom I greatly respect, believes that for me the known risks of leading-edge DMTs outweigh the hypothetical but undocumented benefits. In the case of ocrelizumab, and presumably other lymphocyte-lowering drugs, she considers the risk of infection to be unacceptably high given the high likelihood that it would aggravate MS symptoms and worsen disability. Among factors that make it impossible to draw conclusions about efficacy, she cites the age-55 cutoff in pre-approval ocrelizumab clinical trials.

I don’t see her position as ageist. As far as I can tell, here in Canada very few pwMS over 60 and almost none over 70 are on a DMT. The only ones in use among this group that I’ve heard of are glatiramer and the beta-interferons. Of course this may be a function of payer policies, and it certainly reflects the state of knowledge about DMT efficacy in older pwMS. But is the age-55 cutoff common in DMT studies itself ageist, or are investigators simply trying to sculpt a population conducive to favourable results?

I don’t consider myself risk-averse. I do everything I can to preserve strength and function. I’d love to augment that with a DMT. But I’ve had two systemic infections that led to rapid significant irreversible decline and I have no desire to repeat the experience.

If I’d known what we know now I might have pushed for treatment when I was almost symptom-free. But then, at the time, only the first-wave DMTs were available - the ones now considered low-efficacy. So am I a victim of ageism, or have I been just a bit too old all along?

Expand full comment
Sep 26, 2021Liked by Gavin Giovannoni

Professor Giovannoni. May I ask what do you consider to be an appropriate length of time to 'watch and wait?'

In an individual who is experiencing symptoms of PPMS, do you 'start the clock' from when they first see you, or when they have the first symptoms? I see you constantly disagree with delaying treatment, yet it appears one can wait and wait, developing different symptoms, or the ones already present exacerbating, or even worsening exponentially. I understand (DM) treatment is not always suitable in some older people exhibiting symptoms, but surely some medication to help improve their quality of life is warranted?

Thank you for you and your team's tireless efforts.

Expand full comment
Sep 25, 2021Liked by Gavin Giovannoni

Do you see any significance in late diagnosis? I was dx 2012 at 57 with only a moderate gait problem of a few years; told I 'shouldn't be in a wheelchair within 12 years,' whatever that meant. DMTs weren't prescribed and I was glad. Nearly 10 years later, I haven't had any relapses as such though fatigue has significantly increased and exercise endurance dropped; nordic walking poles improve my walking but I can also do without less far. I have been on Jelanek's OMS programme since dx and do online MSGym daily with a buddy group. I am about to have my first MRI since 2011 and will take your ideas to feedback discussion of a siponimod possibility. In your view I come into the risk averse category but in my mid-60s (average death for women is at 83) surely there is a cost/benefit balance for risks of any medication?

Expand full comment
Sep 25, 2021Liked by Gavin Giovannoni

I think we should consider a minor modification of the definition of inactive MS. If pwMS are on maintenance high efficacy treatments (*mods, natalizumab, ocrelizumab, rituximab, ofatumumab and so on), each with about an ARR of 0.1 then why we say 2 years to define inactive? I would say that it takes 20 years to say one has inactive disease with these drugs based on relapses or focal inflammation

Expand full comment
Sep 25, 2021Liked by Gavin Giovannoni

That what I concluded. Is there anything I can do? I receive my annual phone call next Monday (2 days time)? I only ever have one 10 minute call per year. I know how well I am, but there are always issues to address. My strategy is exercise which is probably as neuroprotective as meds and I am no longer on any other medication.

As you say a higher proportion of pwMS have certain co-morbidities and I did have depression twice, which I put down to MS as there's nothing in my make up which would predispose me to low mood otherwise. My consultant monitored me for nearly three years after I got better because he's an expemplary psychiatrist. Suggested I stick to medication for several year, but I took myself off everything last summer without medical help, as he's semi retired and the GPs were overwhelmed. I took 17 weeks to do it and it has worked well.

Expand full comment
Sep 25, 2021Liked by Gavin Giovannoni

I fall into more than one of these categories. To whit, age and NEDA. I’ve never been so offered any treatment. It’s not that I’m showing any symptoms but the one thing that is always on my mind is BVL. I reverted to my original neurology department when the one I attended would not even let me have an MRI when I offered to pay. I had been with that department 6 years and never been offered a scan. Now I have had one in 2020, the first since 2014 but am told I shan’t need another. It’s as if I don’t count. I know a low Tesla scanner can’t do much to I/D BVL but what ca I do to protect myself especially as my running days are over as far as my knees are concerned. I swim and gym as often as possible but I don’t have a clue how I’m actually doing. My neurologist is co-author of Brain Health; Time Matters and though we chatted at the Torquay MS Information Day, I don’t see him at my clinic. In fact I last saw an NHS consultant in 2004. The MS nurses are great but I am effectively invisible.

Expand full comment
Aug 29, 2022Liked by Gavin Giovannoni

I am not eligible for any treatment and manage m MS through diet (OMS programme), regular exercise, physical therapy (Dr Gretchen Hawley) and meditation. I have inactivity on my MRI and. My Neuro is very much a ‘watch and wait’ kind of Doctor. I have not had a relapse ever and live a clean life. I have tried to swap my Neurologist bur wasn’t allowed. I just keep ticking along.

Expand full comment
Nov 28, 2021Liked by Gavin Giovannoni

Hi Prof G

I've just re-read this excellent article, 2 months on. As someone currently on a "Wait & See" treatment plan, and having observed numerous posts on MS forums, I am concerned that overstretched MS Teams are using W.A.S. as an opportunity to either buy themselves some time or abdicate from the responsibility of making a diagnosis. It is appreciated that to someone on the inside of "the system" such a suggestion would be seen as inflammatory, but perhaps it might warrant a review of the reasons why W.A.S. is at times. a valid medical approach in MS treatment?

Expand full comment
Sep 26, 2021Liked by Gavin Giovannoni

What another interesting article . I have SPMS for about 5 yrs . MS diagnosed 1992. Would you advise the use of DMT’s in what they call benign or inactive Ms Professor?

Expand full comment