We currently have approximately a dozen disease modifying therapies. What is the rationale behind choice of therapy for your MS patients? How would you monitor response to therapy? Is MRI imaging sufficient?
Comments
Folks,
The goal of immunological treatment for MS is currently evolving. It is shifting from the initial goal of slowing the progression of disability to acheiving a "disease activity free state" where possible. This means treating a patient such that they are not having relapses, have no new lesions forming on MRI and no progression of disability. This is not possible in all patients yet, but is achievable, apparently, in a some patients on the newer highly effective therapies. More recently, we are also seeing evidence in certain subsets of patients that with optimal use of certain therapies, that the patients actually improve in function over a matter of 1 to 2 years. The group most likely to achieve this response to therapy appear to be in early phase disease where fatigue, depression and cognitive complaints are the main disabling effects of MS. With several of the newer agents, there is evidence of improvement over time with these patients. We need to accelerate research in this area to determine which therapy gives each patient the best chance to not only achieve a "disease activity free state" but, possibly, recover function.
My comment is that of a private individual, not engaged in research but keenly interested in remedies for the disease.
My son, a doctor, developed MS in February 2008 but has just been declared free of it, following an examination by a Professor of Neurology and a further MRI scan.
The remedies my son has followed have been those of Professor George Jelinek and Professor Roy Laver Swank together with medication from one drug, 'Copaxone'.
Thank you for your encouraging words, however is it possible to be more specific in terms of which treatments are you talking about? For example, I was on Tysabri for 24 months and it went very well but I had to stop using it because it began giving me liver problems.
I'm so happy and thankful for Gilenya. Just started Gilenya a month ago with amazing results. Started the day with an MS attack of strong body cramps and spasms and reduced vision but went home after the 6 hour study with greatly reduced cramps and better vision than I'd had in about 9 years. Now only have mild spasms and some unusual numbness. I'll take it!! My main side effect is terrible light sensitivity and migraine headache. I'm taking imitrix with some relief. Also started taking Gilenya at night instead of early morning, and that seems to be helping. Had posted elsewhere my interest in migraine glasses (tinted lenses said to reduce light sensitivity.) Is there any advice on these lenses?
While I know that reducing relapse rates hopefully slows disability progression, can we please do a bit more to remember those who don't have relapses. Sometimes it seems like if you are a non-relapsing MS patient then you are out in the cold, so to speak. It also seems that nearly all of the existing and new drugs being trialled are unlikely to provide much benefit for non-relapsing patients, except with side effects which probably won’t outweigh the possible benefits of the therapy/ies. So far the drugs approved for RRMS are not approved for use with non-relapsing MS types as their efficacy has not been proven.
Sorry Mr Vollmer (see comment above) but so many statements start with “stopping/reducing relapses” and while this is very important in the overall picture, it means nothing if you don’t have relapses – we are told that all that can be done for us is symptom management (and usually given a prognosis of increasing disability).
As a non-relapsing MS sufferer, I’d be more than happy to settle for “no new lesions forming on MRI and no progression of disability”, so maybe statements about treatment goals need to be universally rephrased as: “Treating a patient such that they have no new lesions forming on MRI and no progression of disability, including reduction or cessation of relapses in cases where relapses occur”.
An absolute bonus for all who have a level of accumulated disability which negatively impacts on their daily life would be a reduction in current disability level! (However, I don’t see this happening any time soon…)
Please not that my comments are absolutely not directed personally at Mr Vollmer, but at all who keep wording statements in such a way that the primary focus seems to be on “reducing/ eliminating relapses”.
Comments
Folks,
The goal of immunological treatment for MS is currently evolving. It is shifting from the initial goal of slowing the progression of disability to acheiving a "disease activity free state" where possible. This means treating a patient such that they are not having relapses, have no new lesions forming on MRI and no progression of disability. This is not possible in all patients yet, but is achievable, apparently, in a some patients on the newer highly effective therapies. More recently, we are also seeing evidence in certain subsets of patients that with optimal use of certain therapies, that the patients actually improve in function over a matter of 1 to 2 years. The group most likely to achieve this response to therapy appear to be in early phase disease where fatigue, depression and cognitive complaints are the main disabling effects of MS. With several of the newer agents, there is evidence of improvement over time with these patients. We need to accelerate research in this area to determine which therapy gives each patient the best chance to not only achieve a "disease activity free state" but, possibly, recover function.
My comment is that of a private individual, not engaged in research but keenly interested in remedies for the disease.
My son, a doctor, developed MS in February 2008 but has just been declared free of it, following an examination by a Professor of Neurology and a further MRI scan.
The remedies my son has followed have been those of Professor George Jelinek and Professor Roy Laver Swank together with medication from one drug, 'Copaxone'.
Thank you for your encouraging words, however is it possible to be more specific in terms of which treatments are you talking about? For example, I was on Tysabri for 24 months and it went very well but I had to stop using it because it began giving me liver problems.
I'm so happy and thankful for Gilenya. Just started Gilenya a month ago with amazing results. Started the day with an MS attack of strong body cramps and spasms and reduced vision but went home after the 6 hour study with greatly reduced cramps and better vision than I'd had in about 9 years. Now only have mild spasms and some unusual numbness. I'll take it!! My main side effect is terrible light sensitivity and migraine headache. I'm taking imitrix with some relief. Also started taking Gilenya at night instead of early morning, and that seems to be helping. Had posted elsewhere my interest in migraine glasses (tinted lenses said to reduce light sensitivity.) Is there any advice on these lenses?
While I know that reducing relapse rates hopefully slows disability progression, can we please do a bit more to remember those who don't have relapses. Sometimes it seems like if you are a non-relapsing MS patient then you are out in the cold, so to speak. It also seems that nearly all of the existing and new drugs being trialled are unlikely to provide much benefit for non-relapsing patients, except with side effects which probably won’t outweigh the possible benefits of the therapy/ies. So far the drugs approved for RRMS are not approved for use with non-relapsing MS types as their efficacy has not been proven.
Sorry Mr Vollmer (see comment above) but so many statements start with “stopping/reducing relapses” and while this is very important in the overall picture, it means nothing if you don’t have relapses – we are told that all that can be done for us is symptom management (and usually given a prognosis of increasing disability).
As a non-relapsing MS sufferer, I’d be more than happy to settle for “no new lesions forming on MRI and no progression of disability”, so maybe statements about treatment goals need to be universally rephrased as: “Treating a patient such that they have no new lesions forming on MRI and no progression of disability, including reduction or cessation of relapses in cases where relapses occur”.
An absolute bonus for all who have a level of accumulated disability which negatively impacts on their daily life would be a reduction in current disability level! (However, I don’t see this happening any time soon…)
Please not that my comments are absolutely not directed personally at Mr Vollmer, but at all who keep wording statements in such a way that the primary focus seems to be on “reducing/ eliminating relapses”.