Here is this mornings blog from St. Barts:
[An admission of the utter failure of MS drugs used for RRMS, where they are claimed to work best, progressing to SPMS!] “#MSBlog MS is emotionally exhausting! Posted: 14 Feb 2013 03:43 AM PST
"Being a neurologist, who sees MSers, a clinical scientist, who studies the disease, and one who puts his head above the parapet,
it is getting increasingly hard not to disappoint people.""One of the issues that I have under estimated is the psychological impact that MS has on you and your families.
This is compounded by disappointment when science and medicine, which promises so much, fails to deliver. This is particularly acute for relapse-onset MSers when you pass from the relapsing into the secondary progressive phase of the disease and you realise that the disease-modifying therapies are not working or have not worked." "In my sociology course at medical school we learnt about Helen Kübler-Ross's five stages of grief, best known by the acronym DABDA (Denial, Anger, Bargaining, Depression and Acceptance). For those of you with relapse-onset disease, not only do you have to go through these stages when you are diagnosed with the disease, but you go through them again when you enter the secondary progressive phase of the disease."
"MS is a double-disease; it hits you twice!"
"
The realisation that the DMTs have failed leads to the re-emergence of grief and the five emotional stages that go with it.
The anger is more often than not directed at the medical team for being impotent to stop the disease; [u]exposing our false promises, which were made to give you hope[/u]. As a result of being an outspoken critic of therapeutic nihilism - the blight of our profession - a proponent of early aggressive treatment and a disciple for the active and holistic management of MS, I seem to be taking more flak than most. It is emotionally exhausting!"
"MS is a very personal disease and each MSer has their own story to tell. Researchers in general seem to forget this and simply think of MSers as a population of people with a disease. This is why our research day is so enlightening; the face-to-face interaction with MSers and their families makes you realise why you are doing what you do and its importance for individuals and their families.
It helps you understand why MSers turn to alternative theories, and treatments, when science and modern medicine lets you down." "As an MSer you need to know about the stages of grief and recognise your emotional reactions to the diagnosis and the onset of the progressive phase of the disease.
The truth is we don't have any therapies to stop or slow disease progression, but we are working on it. If you have symptoms that are impacting on your quality of life we can help. You would be amazed what a difference symptomatic treatment can make to your life."
Here is the posting from the same source the very next day! Natalizumab in childrenPosted: 14 Feb 2013 11:58 PM PST
#MSBlog:
Children with MS respond very well to Natalizumab. Good news for anxious parents!Epub: Ghezzi et al. Nataluzimab in pediatric multiple sclerosis: results of a cohort of 55 cases. Mult Scler. 2013 Feb 11.
BACKGROUND: Limited information is available on the use of natalizumab (NA) in pediatric MSers (ped-MSers).
OBJECTIVE: The purpose of this study was to describe the long-term effects of NA in a large cohort of active ped-MSers.
METHODS: Ped-MSers were treated with NA if in the previous year they had experienced at least two relapses or a severe relapse with incomplete recovery while on immunomodulating treatment, or at least two relapses and new magnetic resonance imaging (MRI) lesions regardless of any prior treatment.
RESULTS: The study included 55 ped-MSers (mean age: 14.4 years, mean number of relapses: 4.4, pre-treatment mean disease duration: 25.5 months). They received a median number of 26 infusions. Three relapses occurred during the follow-up, one female ped-MSer continued to deteriorate in cognitive functioning. Mean Expanded Disability Status Scale (EDSS) scores decreased from 2.7 to 1.9 at the last visit (p<0.001). During the follow-up the majority of ped-MSers remained free from MRI activity. Transient and mild clinical adverse events occurred in 20 ped-MSers . Mild hematological abnormalities occurred in seven ped-MSers. Anti-JCV antibodies were detected in 20/51 tested ped-MSers.
CONCLUSIONS: NA was well tolerated in all ped-MSers. A strong suppression of disease activity was observed in the majority of ped-MSers during the follow-up.
"This study is very good news for anxious parents of children with active MS. Natalizumab works as well in children as it does in adults. We must assume the risks are the same, i.e. the PML risk."A further comment posted on the 21st February 2012 reads:"It is becoming increasingly clear that there is a dissociation between the natural history of MS off DMTs and that which occurs on a DMT.
Relapses and disease activity on a DMT appear to much more sinister and predict a poor outcome compared to what occurs when MSers are not on a DMTs. Maybe the relapses and MRI activity on a DMT imply that the DMT is having no effect on the underlying cause of the disease; relapses and MRI activity are the immune systems way of highlighting this. In comparison in MSers not on a DMT relapses, may or may not occur in response to the underlying cause, and hence have a poor predictive value in that the underlying cause continues unabated."
http://multiple-sclerosis-research.blog ... esearch%29On Monday, 30 May 2011 the great Dr. G wrote:
How the oral DMTs stack-up againt each other in terms of efficacy
I keep getting asked what is the most efficacious oral DMT? The following table is a summary of the headline results of the phase 3 studies for the 5 oral DMTs:
Reduction Reduction
Annual Relapse Rate Disability Progression
1. BG12 53% 38%
2. Cladribine 58% 33%
3. Fingolimod 54% 30%
4. Laquinimod 23% 36%
5. Teriflunomide 32% 30%
Please remember that all agents are associated with particular side-effects and other attributes; hence the decision on which one is more appropriate for a particular person will require some careful thought. Individualised Medicine!
CoI: I have conflicts of interests in relation to all of these compounds. Barts and The London is involved in the clinical development of all of these compounds and I personally have received compensation for acting as an advisor to Biogen-Idec (BG12), Merck-Serono (Cladribine), Novartis (Fingolimod), Teva (Laquinimod) and Sanofi-Aventis (Teriflunomide).Reactions:
Posted by Gavin Giovannoni at 09:21
Just for the record:
"We would like to thank Bayer-Healthcare, Biogen-Idec, Genzyme, Merck-Serono, Novartis and Roche for their generous unrestricted educational grants that were used to host the day. Unrestricted, in this context, means that the companies played no part in the organisation of the day or the content we presented."