Last reply 2 months ago
Are you being monitored for these?

Hi all,

During the past year (the year after my diagnosis), I have been reading a lot of research papers on MS.

One important thing I noticed being mentioned in many papers is that in many trials and researches they take it one step further than just counting lesions on MRI in order to routinely monitor MS:

They measure neurofilament light chain levels (NfL), which are a marker of inflammation going on in the CNS, as well as brain volume loss.

To me, these two sound as very valuable biomarkers, however every time I ask at the hospital I am being told that ‘these are only implemented in research and not in the clinical practice’.

My question to you is: are you being monitored for these two markers?
If yes, could you please give me some more details on where/how?

Thank you beforehand

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stumbler
2 months ago

@miapi , I can only guess that general neurology departments/neurologists aren’t geared up to run these tests……….


embroideress
2 months ago

@miapi There must be a lapse between research trials and clinical practice, but I’m definitely going to ask my neurologist about this, among other things. I too have been reading research papers, and I’m wondering if neurologists have time to read many. These tests probably have to be proven to be efficacious and not too expensive in order for neurologists to have permission to prescribe them. I’m in France and everything must be approved by the Haute Autorité de Santé. Thank you for calling our attention to this. Have you got a link to at least one paper on this?


miapi
2 months ago

@embroideress

I will gladly share an article!
Didn’t even have to look for long, it was in one of my tabs.

This one: https://academic.oup.com/brain/article-abstract/141/8/2382/5025690

What it says in a few words:

Neurofilament levels are an independent predictor of brain volume loss, as well as disease worsening in general.

They also seem very easy to be measured, that’s why I am wondering how come they are not implementing them already.

And, mind you this is only one article out of many..

It just that MRI doesn’t seem enough anymore after reading about this.

If anyone hears anything more about these biomarkers by their neurologist, please let us know


stumbler
2 months ago

@miapi , it was only in early 2017 that a clinical trial (Clinical Trials Gov Identifier:NCT00501943) revealed the potential of neurofilament light chain levels (NfL), being a marker of inflammation going on in the CNS……..


miapi
2 months ago

Thanks for the information @stumbler.
I hope that doesn’t mean that we have to wait too long for them + for brain volume measurement to be implemented in clinical practice.

The more we stay on top of what the illness is -often silently- doing, the more control (I hope) we can have over it


stumbler
2 months ago

@miapi , I wonder who paid for the Clinical Trial that identifies this biomarker?

As it’s just a diagnostic test, then there will be little impetus to develop it further. There’s no money to be made out of it!


miapi
2 months ago

@stumbler
I disagree..
For example: https://www.ncbi.nlm.nih.gov/m/pubmed/29860198/?i=3&from=neurofilaments%20multiple%20sclerosis

In this paper they were used to monitor response of progressive MS to Cladribine.

What maybe is not visible on an MRI level, could be monitored with NfL.. (just a thought)

So, I think that for example they could be used to prove effectiveness of drugs on progressive MS, and therefore open the possibility to target a new group of patients(?)

I am not a dr, or in the field, so I don’t know much, but research is interesting to me


fxms
2 months ago

Brain atrophy, for example, is an emerging biomarker in MS.

My impression is that these new biomarkers are indicators of the course the disease is taking. In many cases, however, they do not correlate with MRI lesion volume, disability progression, relapse rate, EDSS score, etc.

For example: what is the use of halting or reducing brain atrophy if there is little or no impact on disability progression? Laquinimod was (is?) a drug being developed for progressive forms of MS. In Phase II trials, it showed an effect on brain atrophy, but no difference was found in disability progression.

Until the biomarker is not fully validated and cannot be clearly interpreted, they are used merely as ‘vague’ indicators and not as measures of clinical benefit.

Please, be aware that these are my impressions and does not imply in any way that (a) this is the reason why the use of these biomarkers is not yet widespread in clinical practice (b) these are not valuable measures of the activity of the disease.


scarletclarke
2 months ago

I’ve only had two lots of tests so far as I’m very newly diagnosed, but I was tested for these. I’m in the UK in Sheffield and my hospital has an MS centre which runs a lot of the new research and clinical trials and lucky for me my consultant is involved in these.


californiadreamin
2 months ago

@miapi if you watch this video about 12 minutes in the doctors talks about the importance of the nfl and that she tests her patients. She is associated with Bart’s so it is still pretty cutting edge I would assume.


miapi
2 months ago

@fxms
“do not correlate with MRI lesion volume, disability progression, relapse rate, EDSS score, etc.”

That’s not true..
Brain volume loss has been linked to lesion count, and disability progression, as well as cognitive decline.

https://www.ncbi.nlm.nih.gov/m/pubmed/30169585/?i=4&from=multiple%20sclerosis%20brain%20atrophy

https://www.ncbi.nlm.nih.gov/m/pubmed/29560379/?i=69&from=multiple%20sclerosis%20brain%20atrophy

If you search on PubMed for ‘brain atrophy multiple sclerosis’, you will find an abundance of papers..

“Until the biomarker is not fully validated and cannot be clearly interpreted, they are used merely as ‘vague’ indicators and not as measures of clinical benefit.”

The nr of papers mentioning its clear relationship with other MS biomarkers makes me feel that it’s not vague at all. Also, how could actual loss of brain tissue be insignificant by any means?

Of course I would want these biomarkers to be validated as well as linked to actual clinical decisions that can help us, patients, before they are implemented, however I am really not willing to wait years for it. The video that @californiadreamin posted is an excellent one (Thank you!)

@scarletclarke Thank you got your answer. That’s really nice, that you are being treated there : )

I am located in the Netherlands, and things here maybe not be as fastly progressing as in the UK..

I am wondering how feasible it would be to have these tests in the UK as a non-UK citizen.. Does anyone maybe know?

Thanks a lot!

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