I took this figure from a paper that has little to do with the point I’m going to make here today.
After having done this for a few years I hope I have earnt the right to speak my mind?
The Figure demonstrates that only 30% of individuals experience slow progression, whilst an overwhelming 70% deteriorate rapidly without treatment.
Its true MS evolves over a number of years and the trajectory may not be clear at the outset, but the fact remains that MS should be treated early as conceivably possible to avoid long-term disability progression (CDP). This should be the prima facie take home message from this figure, and not that MS is heterogenous condition and affects everyone differently mantra. Because, ruminations and thoughtful contemplation’s are perfectly acceptable in works of fiction and research publications, but have little place in illness.
Thanks for this doc. Some of us regularly post links from this site on MS forums, like the one on Reddit. There is one post every day decrying medication and big pharma. I shall link to this too. When my partner was diagnosed we would waste so much time trying to see if DMTs are actually required or if escalation is better due to those misleading forum posts. Thankfully my partner was being treated by specialists and MS pharmacist reasoned for tysabri/ocrevus from get-go. Really thankful to be in the care of specialists and for this blog.
As we say in my family: good point, well made!
Though this is striking Neuro Doc Gnanapavan two persistent and undermining facts remain: the lack of swift diagnosis meaning any treatment is delayed and secondly the unwillingness of the majority of neuros to hit early and hit hard.
This maybe a generation effect. The more exposure you have to a multitude of treatment options, the more comfortable you become on acting on things. Things were very different back in the days.
I was in a MS Men’s group in 1996. Everyone was on Betaseron. PPMSr’s would be given SPMS labels so that they could take it too. Then Avonex came out, splitting the dose and frequency, making it more “tolerable”.. Then things became less clear, in my opinion. I even did a stint on it, had my first relapse in years, and switched doctors and went back on Betaseron. No relapse for 15 years. SPMS now, but still “about” the same. I do envy the new stronger meds and wish I had been on them.
Yet we still get told look at these leaflets or look at the MS decisions site and make your choice of which treatment you want…….Within 10 mins of being told you’ve got MS with your head still spinning.
They don’t do that with cancer do they?
You may not get that many chocies with cancer
That is my point.
How are we supposed to know which ones are best?
Shouldn’t the expert recommend for MS to be hit hard from the start?
I was so shell-shocked I picked Copaxone because it looked like it had the least side-effects and I was beyond petrified of having side-effects on top of MS…if that makes any sense?
Turns out it was as much use as a chocolate teapot for my brain
Hi Ali, it’s worth passing on this to the MS Trust. The MS decisions is long overdue an overhaul. The options are now many and the same readout is no longer feasible when only a few drugs were available. Expert patients should be able to direct the redesign on what is important for their decision making.
It was the MS nurse who told me to look at that website because there were no leaflets in the cupboard! (so not fault of MS decisions site)
And the amount of times she told me they don’t have crystal balls and nobody can tell the future each time I asked her about what I was going to end up like made we want to sock her one.
I KNOW there is no crystal balsl, but surely the experts know more than we do at the start?
I think Prof G has covered some of these problems and in his words had his eyes opened over some of the things we have flung at us and PTSD has been mentioned
Are these results of treated or untreated people?
Untreated
“Untreated” = People treated w/ineffective therapies….which is what most all DMT’s are. Most of them should be taken off the market to protect people’s brains from outdated/ineffective/expensive therapies.
Having worked on a Neuro floor in the 1980’s, I agree. I wrote this when I was diagnosed to remind myself and others, why treatment is essential.
https://traveloguefortheuniverse.blogspot.com/2011/09/wheelchair-repellant.html
This is powerful, Mary. Thanks for the share.
This is a very nice post
More and more treat early treat hard makes sense
But the paper its a road show of coi
Conflict of interest statement
Conflict of interest statement: Thomas Berger has participated in meetings sponsored by and received honoraria (lectures, advisory boards, consultations) from pharmaceutical companies marketing treatments for multiple sclerosis: Almirall, Bayer, Biogen, Biologix, Bionorica, Genzyme, MedDay, Merck, Novartis, Octapharma, Roche, Sanofi/Genzyme, TG Pharmaceuticals, TEVA-ratiopharm and UCB. His institution has received financial support in the last 12 months by unrestricted research grants (Biogen, Merck, Novartis, Sanofi/Genzyme) and for participation in clinical trials in multiple sclerosis sponsored by Biogen, Merck, Novartis, Roche, Sanofi/Genzyme, and TEVA. Monika Adamczyk-Sowa has participated in meetings sponsored by and received honoraria (lectures, advisory boards, consultations) from pharmaceutical companies marketing treatments for multiple sclerosis: Bayer, Biogen, Merck, Novartis, Roche, Sanofi/Genzyme, TEVA. Tunde Csepany has participated in meetings sponsored by and received honoraria (lectures, advisory boards, consultations) from pharmaceutical companies marketing treatments for multiple sclerosis: Biogen, Merck, Novartis, Roche, Sanofi/Genzyme, TEVA. Tanja Hojs Fabjan received speaker honoraria and consultant fees from Bayer, Biogen, Lek, Novartis, Roche, Sanofi/Genzyme and for participations in trials in multiple sclerosis sponsored by Bayer, Biogen, Roche. Dana Horakova received compensation for travel, speaker honoraria, and consultant fees from Bayer, Biogen, Merck, Novartis, Roche, Sanofi/Genzyme and Teva, as well as support for research activities from Biogen. She is also supported by the Czech Ministry of Education research project PROGRES Q27/LF1. Zsolt Illes has participated in meetings sponsored by and received honoraria (lectures, advisory boards, consultations) from pharmaceutical companies marketing treatments for multiple sclerosis: Biogen, Merck, Novartis, Roche, Sanofi/Genzyme, TEVA, and received research grants from Biogen, Merck and Sanofi/Genzyme in the last 12 months. Eleonóra Klímová has participated in meetings sponsored by and received honoraria (lectures, advisory boards, consultations) from pharmaceutical companies marketing treatments for multiple sclerosis: Biogen, Merck, Novartis, Roche, Sanofi/Genzyme and TEVA. Gisela Kobelt has provided consulting and speaking services to Almirall, Bayer, Biogen, Merck, Novartis, Oxford PharmaGenesis, Roche, Sanofi/Genzyme, and Teva. Fritz Leutmezer has participated in meetings sponsored by and received honoraria (lectures, advisory boards, consultations) from pharmaceutical companies marketing treatments for multiple sclerosis: Biogen, Celgene, MedDay, Merck, Novartis, Roche, Sanofi/Genzyme and TEVA. Konrad Rejdak has participated in meetings sponsored by and received honoraria (lectures, advisory boards, consultations) from pharmaceutical companies marketing treatments for multiple sclerosis: Bayer, Biogen, Merck, Novartis, Roche, Sanofi/Genzyme, TEVA. Saša Šega Jazbec received travelling grants and speaking honoraria from Biogen, Merck, Roche, Sanofi/Genzyme and Teva. Csilla Rozsa has participated in meetings sponsored by and received honoraria (lectures, advisory boards) for multiple sclerosis: Biogen, Merck, Novartis, Roche, Sanofi/Genzyme and TEVA. Johann Sellner has participated in meetings sponsored by and received honoraria (lectures, advisory boards, consultations) from pharmaceutical companies marketing treatments for multiple sclerosis: Alexion, Biogen, Celgene, MedDay, Merck, Novartis, Roche, Genzyme/Sanofi, TEVA-ratiopharm. His institution has received financial support in the last 12 months by unrestricted research grants (Biogen, Merck, Sanofi/Genzyme) and for participation in clinical trials sponsored by Merck and Roche. Krzysztof Selmaj received honoraria for consulting and speaking from Biogen, Celgene, Merck, Novartis, Roche and TG Therapeutics. Jarmila Szilasiova has participated in meetings sponsored by and received honoraria (lectures, advisory boards, consultations) from pharmaceutical companies marketing treatments for multiple sclerosis: Biogen, Merck, Novartis, Roche, Sanofi/Genzyme and TEVA. Manuela Vaneckova has participated in meetings sponsored by and received honoraria (lectures, advisory boards, consultations) from pharmaceutical companies marketing treatments for multiple sclerosis: Biogen, Novartis, Roche, Sanofi/Genzyme, TEVA, and received research grants from Biogen and Roche in the last 12 months; supported by the Czech Ministry of Education research project PROGRES Q27/LF1 and RVO-VFN64165. Peter Turcˇáni has participated in meetings sponsored by and received honoraria (lectures, advisory boards, consultations) from pharmaceutical companies marketing treatments for multiple sclerosis: Bayer, Biogen, Merck, Novartis, Roche, Sanofi/Genzyme, Teva. His institution has received financial support in the last 12 months by unrestricted research grants (Merck, Novartis, Roche, Sanofi/Genzyme) and for participation in clinical trials in multiple sclerosis sponsored by Biogen, Merck, Novartis, Roche, Sanofi/Genzyme, and Teva. László Vécsei has participated in meetings sponsored by and received honoraria (lectures, advisory boards, consultations) for multiple sclerosis: Biogen, Merck, Novartis, Roche, Sanofi/Genzyme and TEVA. Eva Kubala Havrdová: honoraria/research support from Biogen, Merck, Novartis, Roche, and Teva; advisory boards for Actelion, Biogen, Celgene, Merck, Novartis, and Sanofi/Genzyme; supported by the Czech Ministry of Education research project PROGRES Q27/LF1
58 lines (hope to have count that right)
One off the greats (maven) in cancer research Bob Weinberg starts is talks by saying
“Today there re more people living from cancer than dying from it”
Caneco
🙁
John Collinge use to start I am going to talk about a disease (BSE) that is going to kill you
Base Prion disease
FFI
Its also a prion disease
and a very nasty one
Bse
Mine is a bit puny by comparison but I take that as a challenge (kidding!)
If you have the intelligence/mindset to do your reading, you’ll be able to to challenge your neuro if necessary. If you can’t do this, you’re stuffed. Perhaps it was ever so.
Kay, my experience has been that the forums are also highly influential in an MS patients decision on treatment. I have found myself going ‘really?’ many a time in consults. But, the problem is the outcome of that one decision doesn’t really present itself until a few years down the line. You’d be surprised at how many people by that point do not remember the initial advice and or even have a copy of their initial consultation. If any of you still have your first letter have a read. An experienced MS patient would have a look at that letter and know also.
From the point of diagnosis many years ago I have filed every medical letter in date order in a transparent-page book so I can look back when I need to. Doing that is part of my strategy of keeping the MS in its box, as it were.
Doc, i think that a big problem (and i am talking from experience) is that its very difficult to even get a referral to a nuerologist. They are built up as these masterminds that live in a small cave and you’re lucky to even gain entry. So when the same mastermind tells you that you scary incident was just an isolated case, you take what he is saying as gospel and you’re also just immensly relieved to be told that its not any of the scary things that you have read about on the internet. You trust their judgement because they are the expert. I feel like i pushed my own case. I paid privately for scans and consultations when the NHS nuero refused by GP referral (he was actually the same guy who ran the private clinic – how is your luck!). Maybe i should have done more reading at the time. I believe a different nuero would have diagnosed my MS earlier. I know this is about treatment but the point is the same. Patients trust there nuero because they think they know best. You dont get to that stage of a career without being very intelligent. So what is the issue with so many of them not taking the hard and early route? is it managing budgets or just sheer ignorance?
This is the truly scary thing: you can’t know if you’re being referred to a time-server. The best bet is a teaching hospital and a specialist MS neuro, but how is already-terrified-prospective-patient expected to know this and is it any surprise that s/he takes as gospel what is said?
“is it managing budgets or just sheer ignorance?”
$5,000 a month for Betaseron or Copaxone… Have to say budgets/effectiveness aren’t even in the picture……mmm…so that leaves us with “sheer ignorance”.
If this is a chart of untreated people, is there also a chart somewhere of treated people for comparison?