What I would like to have heard from the neurologist who diagnosed me 30 years ago. and all the others since, 'I will treat you as I would treat myself". I am 64 now with EDSS 6/6.5 and have never fitted a profile along the way which has allowed treatment. So now described as SPMS. I wish you the very best with this approach. And I'm glad I did the Nataliszumab trial for 2 years + as it may turn out to be the only treatment I will get!
Dr. Giovanni, what about a study of those who early in their diagnosis adopt a holistic, anti-oxidant, anti-inflammatory lifestyle that includes diet, movement, stress management, sleep and social connections compared. I am thinking of Dr. Wahls and Dr. Stancic. Both went on the conventional treatment, continued to decline. But once they adopted an anti-inflammatory, nutrient dense lifestyle, they turned things around. In fact, Dr. Stancic marked her 20th anniversary of her diagnosis by taking a 20 mile walk with friends. This blows my mind as I can only do 1.5 to 2 miles right now. To me, if one takes the best in class treatments, but continues with an inflammatory lifestyle, why should improvement be expected? From what my layperson brain has learned, our bodies our geared towards healing if given the right environment and inputs, namely homeostasis based upon nutrient dense inputs, frequent movement, positive thinking, appropriate sleep, elimination of negative stress and frequent cognitive challenges to promote "fire and wire" hormetic lifestyle challenges. I would love to see such a study.
A sobering read. A related question for those of us who already had many silent lesions at point of diagnosis: do you think there is any benefit to knowing how long we have probably had MS? I nearly asked my neurologist at the last appt, but wasn't sure if there was an upside to finding out (save for satiating my curiosity)...
I was wondering if there’s a study showing early activity / relapses in first few years after onset of MS with long term prognosis of disability? I’m sure I’ve seen it somewhere but can’t locate it now.
This model of treating pwMS seems to differ from many other sectors of the NHS; cancer, strokes come to mind. Why is this? NICE or health politics? It seems so hard to change. What it must do to people who deteriorate knowing they may not be eligible for the treatments that could conserve the health they still have, such as upper limb function.
Hello Doctor: A side question- The 4 graphs you present of long term results for beta 1b from 2012, if I am reading correctly, show a slightly better outcome for a dose smaller (50 ug), than for the standard dose which was 250 (.25 mg). Am I correct? I know at one point there was a "more is better" study which failed to show benefit. I always believed the interferon 1b Betaseron dose to be stronger than Avonex and therefore more effective.
I was on 1b for 23 years, and the mantra back then was the earlier you start the better off your'd be. Yet, it still gets pushed aside. I'm currently "intermittent cane" due to MS gait + flat naturally low arch foot = PTTD or some version of that. No complaints, I certainly agree with quick treatment, because if your plan is improved survival and you are paying attention, you have no other choice.
Does starting out with Tysabri help in this instance?
I’m a healthy (bar MS) 35M who was diagnosed last year and chose Tysarbi due to covid.
I have no clue how long Ms has been with me probably years, also EBV positive, but how late is too late for treatment?
I’m looking to move to Mavenclad however next month, can’t take the daily headaches from Tysabri anymore and like the idea of an IRT option (too nervous about Lemtrada), wise option?
I’m in Australia and unfortunately can’t get HSCT though my neurologist has pushed Lemtrada a few times.
So what i want to know is how manny years interferon treatment save the patient to reach disability milestones
Aparently this study from Novartis just came out, saying that a more potentdrug(fingolimod)
Saves you only 3.5years against placebo
Now imaging you tell your naive patient ,i have this very good drug that you have to take for the rest of your life ,it will give you liver issues possible heart issues and you will gain 3,5 years more before reach edss 6 Professor if you were that patients will you take it?
New study details the ways patients with multiple sclerosis develop impairment
Treating patients with DMTs delayed these times significantly by 3.51 years (95% confidence limit: 3.19, 3.96) and by 3.09 years (2.60, 3.72), respectively
The cost for Gilenya oral capsule 0.5 mg is around $9,980 for a supply of 30 capsules, depending on the pharmacy you visit. Prices are for cash paying customers only and are not valid with insurance plans.
Out of interest if someone was diagnosed and put on DMF before Oclizumab was licensed, should they ask about switching to that now as it’s more effective?
As I was breastfeeding when I first saw my MS nurse, I was offered a beta interferon DMT. My son self-weaned the week before I first injected with Plegridy, but my nurse will not swap treatments the whole time the side effects are manageable, and they are waiting for new baseline MRIs in June followed by a year of waiting to see if this changes. I feel like I should be pushing for a more highly effective DMT, but already feel that I won't be listened to.
In the attack ms trial are you referring to randomising patients before they have finished the MS diagnostic pathway to treatment meaning a CIS diagnosis vs. delayed access due to not having a CDMS diagnosis?
I definitely agree that more effective treatments should be used first. At the moment there is no treatment for myelin repair so it’s better to prevent the damage and disability. It’s not just about length of life but quality of life. I was diagnosed with CI syndrome in 2008 and DMTs weren’t offered until I had another relapse 18 months later. Copaxone had horrible side effects and probably wasn’t any better than placebo. 18 months later I had one relapse after another which left me being pushed in a wheelchair for about 5 months because I had difficulty using my left arm as well as the difficulty walking. Unfortunately my neurologist at the time refused to see me and had failed to look at the reports that a registrar wrote in my notes about me. My MS nurse helped to get me MRI scans and get me reclassified as Rapidly Evolving RRMS so I qualified for Tysabri. Tysabri was brilliant and my EDSS dropped to 1. Unfortunately after 2 years I moved to a different area and my new neurologist persuaded me to change to Fingolimod because of the PML risk. Once again the side effects were awful and I relapsed, putting me back in a wheelchair and causing me difficulty using my right arm. I took myself off Fingolimod and persuaded the neurologist to put me back on Tysabri. My EDSS dropped to 3. Once again after 2 years he tried to persuade me to come off Tysabri. I was told that I didn’t qualify for HSCT in the UK so my husband withdrew the money from his pension fund for my treatment in Moscow. I’ve been in remission for 3 years now and have an EDSS of 1, however during the time messing about on useless drugs, with horrible side effects had a massive affect on my QOL and I had to give up my business.
Interest stuff. I have an appointment with my Neuro tomorrow and 'Treatment Inertia' is something I will mention, along with 'Smoldering MS'. Wish me luck! I feel I am a sitting duck waiting for something symptoms to occur. Can there be an MSer that is asymptomatic, and evidence that they can manage without DMTs?
My last 2 MRIs have noted inactive lesions so I can understand why my annual MRI was cancelled this year. It seems that NHS PCTs all have different views on MRI frequency.
I am lucky to say I feel that I am in rude health thankfully at the moment.
I have been offered nothing except pain relief, I have now moved to secondary progressive ms and have been told it is of the smouldering type and therefore nothing can be done!! Just keep on keeping on. Thankyou so much for your newsletters and podcasts xx
What I would like to have heard from the neurologist who diagnosed me 30 years ago. and all the others since, 'I will treat you as I would treat myself". I am 64 now with EDSS 6/6.5 and have never fitted a profile along the way which has allowed treatment. So now described as SPMS. I wish you the very best with this approach. And I'm glad I did the Nataliszumab trial for 2 years + as it may turn out to be the only treatment I will get!
Dr. Giovanni, what about a study of those who early in their diagnosis adopt a holistic, anti-oxidant, anti-inflammatory lifestyle that includes diet, movement, stress management, sleep and social connections compared. I am thinking of Dr. Wahls and Dr. Stancic. Both went on the conventional treatment, continued to decline. But once they adopted an anti-inflammatory, nutrient dense lifestyle, they turned things around. In fact, Dr. Stancic marked her 20th anniversary of her diagnosis by taking a 20 mile walk with friends. This blows my mind as I can only do 1.5 to 2 miles right now. To me, if one takes the best in class treatments, but continues with an inflammatory lifestyle, why should improvement be expected? From what my layperson brain has learned, our bodies our geared towards healing if given the right environment and inputs, namely homeostasis based upon nutrient dense inputs, frequent movement, positive thinking, appropriate sleep, elimination of negative stress and frequent cognitive challenges to promote "fire and wire" hormetic lifestyle challenges. I would love to see such a study.
A sobering read. A related question for those of us who already had many silent lesions at point of diagnosis: do you think there is any benefit to knowing how long we have probably had MS? I nearly asked my neurologist at the last appt, but wasn't sure if there was an upside to finding out (save for satiating my curiosity)...
Sad read for us who have left it too late and are now secondary progressive...
I was wondering if there’s a study showing early activity / relapses in first few years after onset of MS with long term prognosis of disability? I’m sure I’ve seen it somewhere but can’t locate it now.
This model of treating pwMS seems to differ from many other sectors of the NHS; cancer, strokes come to mind. Why is this? NICE or health politics? It seems so hard to change. What it must do to people who deteriorate knowing they may not be eligible for the treatments that could conserve the health they still have, such as upper limb function.
Hello Doctor: A side question- The 4 graphs you present of long term results for beta 1b from 2012, if I am reading correctly, show a slightly better outcome for a dose smaller (50 ug), than for the standard dose which was 250 (.25 mg). Am I correct? I know at one point there was a "more is better" study which failed to show benefit. I always believed the interferon 1b Betaseron dose to be stronger than Avonex and therefore more effective.
I was on 1b for 23 years, and the mantra back then was the earlier you start the better off your'd be. Yet, it still gets pushed aside. I'm currently "intermittent cane" due to MS gait + flat naturally low arch foot = PTTD or some version of that. No complaints, I certainly agree with quick treatment, because if your plan is improved survival and you are paying attention, you have no other choice.
Does starting out with Tysabri help in this instance?
I’m a healthy (bar MS) 35M who was diagnosed last year and chose Tysarbi due to covid.
I have no clue how long Ms has been with me probably years, also EBV positive, but how late is too late for treatment?
I’m looking to move to Mavenclad however next month, can’t take the daily headaches from Tysabri anymore and like the idea of an IRT option (too nervous about Lemtrada), wise option?
I’m in Australia and unfortunately can’t get HSCT though my neurologist has pushed Lemtrada a few times.
Nice
So what i want to know is how manny years interferon treatment save the patient to reach disability milestones
Aparently this study from Novartis just came out, saying that a more potentdrug(fingolimod)
Saves you only 3.5years against placebo
Now imaging you tell your naive patient ,i have this very good drug that you have to take for the rest of your life ,it will give you liver issues possible heart issues and you will gain 3,5 years more before reach edss 6 Professor if you were that patients will you take it?
New study details the ways patients with multiple sclerosis develop impairment
Treating patients with DMTs delayed these times significantly by 3.51 years (95% confidence limit: 3.19, 3.96) and by 3.09 years (2.60, 3.72), respectively
https://medicalxpress.com/news/2022-02-ways-patients-multiple-sclerosis-impairment.html
https://oup.silverchair-cdn.com/oup/backfile/Content_public/Journal/brain/PAP/10.1093_brain_awac016/1/awac016_supplementary_data.pdf?Expires=1647885550&Signature=p2eG38oibV9XY9ah45wxLlxNMznWE9OrVkUqAHf602pMFxzHP2QmqXHYdPGOkddJYGt-gSqRiOzQhsRPEg9bWk30p~jPej1TLqmXoXipNiViEhO6RdX1U3PpQrY~Vxt-JkRYY5n7XpO04AA0oEStJgHnWotvMt2z2bstRjt5lmzZO5eFaFqZByave3dbbV8fDQO5nrWUdEFX4kT7jrOAmeH2fCk16au5zJje3Yxm20d75WCNzJjuOVWTaUvLm~NL7EICmI1bAzMRmov9oKisgotp~z2mG5jQjjg2i1~KgHYxnsVynZXTzgI2YPrqjqKr4cet78CkvDDwI3YBoBJgMA__&Key-Pair-Id=APKAIE5G5CRDK6RD3PGA
Oh i forgot ye$ ye$
The cost for Gilenya oral capsule 0.5 mg is around $9,980 for a supply of 30 capsules, depending on the pharmacy you visit. Prices are for cash paying customers only and are not valid with insurance plans.
Out of interest if someone was diagnosed and put on DMF before Oclizumab was licensed, should they ask about switching to that now as it’s more effective?
As I was breastfeeding when I first saw my MS nurse, I was offered a beta interferon DMT. My son self-weaned the week before I first injected with Plegridy, but my nurse will not swap treatments the whole time the side effects are manageable, and they are waiting for new baseline MRIs in June followed by a year of waiting to see if this changes. I feel like I should be pushing for a more highly effective DMT, but already feel that I won't be listened to.
In the attack ms trial are you referring to randomising patients before they have finished the MS diagnostic pathway to treatment meaning a CIS diagnosis vs. delayed access due to not having a CDMS diagnosis?
I definitely agree that more effective treatments should be used first. At the moment there is no treatment for myelin repair so it’s better to prevent the damage and disability. It’s not just about length of life but quality of life. I was diagnosed with CI syndrome in 2008 and DMTs weren’t offered until I had another relapse 18 months later. Copaxone had horrible side effects and probably wasn’t any better than placebo. 18 months later I had one relapse after another which left me being pushed in a wheelchair for about 5 months because I had difficulty using my left arm as well as the difficulty walking. Unfortunately my neurologist at the time refused to see me and had failed to look at the reports that a registrar wrote in my notes about me. My MS nurse helped to get me MRI scans and get me reclassified as Rapidly Evolving RRMS so I qualified for Tysabri. Tysabri was brilliant and my EDSS dropped to 1. Unfortunately after 2 years I moved to a different area and my new neurologist persuaded me to change to Fingolimod because of the PML risk. Once again the side effects were awful and I relapsed, putting me back in a wheelchair and causing me difficulty using my right arm. I took myself off Fingolimod and persuaded the neurologist to put me back on Tysabri. My EDSS dropped to 3. Once again after 2 years he tried to persuade me to come off Tysabri. I was told that I didn’t qualify for HSCT in the UK so my husband withdrew the money from his pension fund for my treatment in Moscow. I’ve been in remission for 3 years now and have an EDSS of 1, however during the time messing about on useless drugs, with horrible side effects had a massive affect on my QOL and I had to give up my business.
Interest stuff. I have an appointment with my Neuro tomorrow and 'Treatment Inertia' is something I will mention, along with 'Smoldering MS'. Wish me luck! I feel I am a sitting duck waiting for something symptoms to occur. Can there be an MSer that is asymptomatic, and evidence that they can manage without DMTs?
My last 2 MRIs have noted inactive lesions so I can understand why my annual MRI was cancelled this year. It seems that NHS PCTs all have different views on MRI frequency.
I am lucky to say I feel that I am in rude health thankfully at the moment.
Has expected mortality increased or decreased with the introduction of newer highly effective therapies since these trial findings ?
I have been offered nothing except pain relief, I have now moved to secondary progressive ms and have been told it is of the smouldering type and therefore nothing can be done!! Just keep on keeping on. Thankyou so much for your newsletters and podcasts xx