Wednesday, 1 July 2015

Neuros lacking ambition?

N. de Stefano, M. L. Stromillo, A. Giorgio, M. L. Bartolozzi, M. Battaglini, M. Baldini, E. Portaccio, M. P. Amato, M. P. Sormani
Long-term assessment of No Evidence of Disease Activity (NEDA) in patients with relapsing-remitting multiple sclerosis

Background/aims : In multiple sclerosis (MS), assessment of the status of “no evidence of disease activity (NEDA)” usually incorporates active MRI lesions, relapses, and disability progression. MRI-derived brain volume loss (BVL) has been recently proposed as an additional component (NEDA-4). Only a few data are available on the persistence of NEDA in the long term in MS patients. 

Methods or Materials or Case Report: We studied a population of 91 RRMS patients (mean age=34 years, mean disease duration=5 years, median Expanded Disability Status Scale (EDSS)=1.5, 71% females). Patients underwent clinical and MRI examinations over 10 years. The 90% of patients were treated with current disease-modifying therapies (DMTs) during the study follow up. NEDA was defined as no new/enlarging T2 lesions on MRI, no relapses and no EDSS progression and was assessed over 10 years. NEDA-4 was also assessed, keeping the annualized value of -0.4% as the cut-off for no evidence of BVL.
Results: After 10 years, there were RRMS patients free from MRI activity (22%), relapses (33%), EDSS progression (55%) and BVL (37%). Patients with NEDA were 8 of 91 (8.8%) and patients with NEDA-4 were 5 of 91 (5.5%).
Conclusion: In a clinical population of RRMS patients, NEDA rarely persists in the long term. NEDA is an interesting outcome for clinical trials, but it might not be a realistic goal in clinical setting with current DMTs.
In the recent post on the UK neurologists guidelines, that there was no real view that NEDA had to be a target. As you said- an opportunity missed.

This study presented at EAN looks at a group of MSers an how NEDA was achieved. No evidence of disease activity was achieved in only 6% of people after ten years. Is this the level of ambition of our neurologists... woeful? 

ProfG gave a talk about kidney transplants an how nephrologists aim to save every bit of kidney tissue. Why should neurologists not similarly care about every bit of brain. You can always get a new kidney but you are not getting a new brain. 

Is it not time that you get your neuros to wake up. The best way to save brain is to get your MS under control as quickly as possible. Wait an see maybe be what risk averse Neuros's your brain 


  1. Assuming these patients weren't on highly effective DMT (based upon 10 year follow up ruling out Lemtrada and Tysabri unless they were on a clinical trial), you could tear up their conclusions and use the same data to write a paper titled: Low efficacy treatments fail in 95% of patients over 10 years.

    That's the real story here, for me.

    Contrary to the conclusions of the paper, I'd suggest this makes the polar opposite point to that which they're concluding: i.e. Neurologist need to be much more aggressive in pursuing NEDA.

    Also worth noting that it doesn't say the neuros treating these patients were following a NEDA-4 strategy (it's effectively measuring how frequently NEDA-4 is maintained by fluke whilst applying current - non-NEDA - strategies.

    1. The concept of NEDA was not around ten years ago for neuros at least so as you say this is the course of standard treatment based on that started ten years ago.
      However if the two biggest selling drugs are avonex and glaterimer the start now is the sale. if NEDA is not adopted we can se the result in ten years.

  2. Not sure why some neuros are like this. Funny specialism to get in to. It's not glamorous - Holby City docs are always surgeons. There's not much job satisfaction in the same ways as an oncologist - "Mrs Smith, there is no sign of any cancer after your treatment". Oncologists see cancers as an enemy and treat accordingly - aim of treatment is to eradicate all the cancer cells. Only neuros allow a disease to fester on by prescribing ineffective treatments such as the interferons. I once saw a programme where a man was diagnosed with MND. The neuro couldn't have been more heartless "2-4 years at best, nothing we can do". I'd introduce compulsory work shadowing for all neuros - workshadowing an oncologist. Even when a cancer patient has little hope, the oncologist tries their best. There is also the joy (I've attended such a session) where the oncologist tells someone their cancer has gone and go live your life. If only neuros could offer some of their MS patients such hope.

  3. My Dr here in NYC told me 'You will dance at your daughter’s Wedding' and that RRMS is 'easy' and that it will have 'no impact on my life - live your life'. He very aggressively manages to NEDA. and I believe that he can deliver. I wish others were getting the treatment that I am getting. We have the technology today to manage the vast majority of RRMS patients to NEDA4 but we accept the story that MS is a slow inevitable demise. The treatment options should be inverted rather than starting with a low efficacy drugs and working up it would be best to start with highly effective and work down. For a newly diagnosed person that is JC virus negative they should go on Tysabri or if JC positive they should be given Rituxan. That will get most people to Ocrelizumab. The cost of these more expensive drugs must be less than the economic impact of the alternative. If we cannot give ambition to the Neurologists can we create demand from the patients? If Rituxan is off-label then look really hard at the patient’s knees, fingers and toes find RA and then holistically treat.


    PS Had to IM someone in the London office to find out what Holby City was, it used to be Casualty.

  4. That's a bit of a statement "you can always get a new kidney"!

  5. I've come across a couple of general neurologists like this. They did the minimum unless I asked. I've come to the conclusion I have to be very on the ball, very knowledgeable about my condition, pushy (but not agressive) and be cinical. The same goes for seeing GP's.
    Before my first ever relapse I rarely visited the GP about once every 4 years. I worked in a particular job for 5.5 years before this first relapse/symptom and had in total 15 days off sick in this 5.5 years. I was a well person then. The last time I vistied the hospital as a patient was 19 years before this relapse. That was to the eye hospital for eyelash dye making my eye swell, not MS related.

    I was inexperienced in having appointments with medical professionals at the time my MS first showed. I have an MS neurologist now which is good.

  6. I've gone private health insurance now, not that it will help me with my MS as it is an existing condition. If only I had private healthcare before and had the hindsight. I would hopefully have seen an MS neurologist quite quickly. I had a very traumatic first experience of MS with delays to being referred to the hospital and steroid treatment and i'm suffering from PTSD. I'm having CBT.
    The general neurologist that diagnosed me with PTSD said to me something like "you need to get better" he didn't want to talk about my symptoms and terrible experience. It felt like he wanted to sweep it under the carpet and get me out the consultation room.
    Sorry for being a burden on the NHS.


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