His neurologist has recommended he start fingolimod with no discussion about other treatment options. Is there any advice you can give about the underlying principles of treating MS in young people?
Every time I read your work I end up with the same conclusion. People with PPMS (although I agree it's all the same disease) should be able to try drugs like Mavenclad or Lemtrada early on, before things 'progress' too far.
I agree, but the regulators and payer don't. You need to keep in mind that not everyone agrees with my view of MS so there will be resistance from within the MS community to change the treatment paradigm.
I have been diagnosed with PPMS although my neuro says she'd call it CIS if I didn't have a bit of weakness in one leg. It's all confounded by a complete loss of disc height at L5/S1 resulting in obvious sciatica. So maybe it is CIS. I'd pay out of pocket to hit it with Mavenclad or Lemtrada now rather than wait for definite MS to develop.
Thank you for taking the time to write this comprehensive post. A one stop must read for anyone with questions about treatment. Perhaps we should all question our treatment from time to time! Even 'people in wheelchairs' (think I prefer 'wheelchair users') and all those I know walking around with 'mild' MS and no treatment at all.
If I were him I'd be tempted to wait until I turned 18 and suddenly eligible for a wider range of treatments! That's if he still met the eligibility criteria assuming no disease activity until then. Of course that is a risky assumption to make...
Sometimes even short delays in starting treatment can have catastrophic consequences. Who knows when the next relapse is going to occur and how severe it is going to be. I have a few patients who have ended up very disabled having had relapses due to delays in starting treatment. My particular concern are patients with MS waiting to be treated with AHSCT. Delays in getting AHSCT started is a recurring issue in the UK.
Such an excellent article. I was diagnosed in 2008. A combination of pride, hopium. , and lack of understanding has defined my treatment choices. I remember the neurologist very early on telling me that I should go on a disease modifying treatment as soon as possible I interpreted his advice as scolding and contemptuous. I was embarrassed and I was and confused. That was my first meeting and when I hesitated he transferred me back to my GP’s care. I later found the MS clinic but only for relapse treatment and then Rebif. In the beginning of my MS journey I walked into MS believing my strength and positivity would somehow add to my protection.
Time has swiftly changed and enhanced the treatment options I appreciate your inclusion of us at this stage of our MS.
OK, throwing in a quick question. I am a excellent responder to Fampyra. I have limited insurance and it is too expensive ( in Canada) I will go on 4-aminopyrigine Will this provide a decent efficacy- any tips or tricks to help stabilize the blood concentrations?
Thank you so much for all the informations you share with us. Its always so clear even for someone who is not ( at all ) a scientific minded person.
I'm wondering what do you think about the prognosis of a newly diagnosted on an anti cd20 first line and without any disabling or oligoclonal bands on the spinal tap ? ( yes this is my case ... )
I would like to know if you agreed with Stephen Hauser and other specialists who says that we can resonably be confident about a future with no disabling for those whose ms is starting nowadays... ( seeking for hope ) ...
We have no idea if anti-CD20 works in OCB-ve MS. OCB-ve subjects were excluded from the PPMS trial and the number in the relapsing OPERA 1&2 trials would be very small.
I suspect OCB-ve MS will turn out not to be MS when we have a diagnostic test for the disease.
I love my pills but would not want my child put on Fingolimod!
It is relatively safe and so convenient, especially as I am phobic about needles - hence I fought to stay on it even when my white blood cells were dangerously low (& risked Covid).
BUT I still deteriorate (due to MS? or Covid?) and am now kind of stuck on it ... as I dare not come off it because of the rebound risk.
So whilst at my age I don't necessarily regret my choice, if it was my son I would politely but firmly request the best long term treatment.
The article is a must-read for anybody newly diagnosed, whatever their age, to understand in simple terms what lies ahead and the help and advice that is available.
I fall into the NEIDA category and my Neurologist, who has recently retired, has not offered me any DMTs. I have been super-lucky to lead an active lifestyle with only small moderations to facilitate any walking disruptions and fatigue.
I do not get to meet my new Neurologist until September 2025. Apparently, I am allowed to contact my MS Nurse if I need anything. Fingers crossed I am blessed with good health.
Every time I read your work I end up with the same conclusion. People with PPMS (although I agree it's all the same disease) should be able to try drugs like Mavenclad or Lemtrada early on, before things 'progress' too far.
I agree, but the regulators and payer don't. You need to keep in mind that not everyone agrees with my view of MS so there will be resistance from within the MS community to change the treatment paradigm.
I have been diagnosed with PPMS although my neuro says she'd call it CIS if I didn't have a bit of weakness in one leg. It's all confounded by a complete loss of disc height at L5/S1 resulting in obvious sciatica. So maybe it is CIS. I'd pay out of pocket to hit it with Mavenclad or Lemtrada now rather than wait for definite MS to develop.
Thank you for taking the time to write this comprehensive post. A one stop must read for anyone with questions about treatment. Perhaps we should all question our treatment from time to time! Even 'people in wheelchairs' (think I prefer 'wheelchair users') and all those I know walking around with 'mild' MS and no treatment at all.
Re: 'people in wheelchairs' (think I prefer 'wheelchair users')
I agree; changes made.
If I were him I'd be tempted to wait until I turned 18 and suddenly eligible for a wider range of treatments! That's if he still met the eligibility criteria assuming no disease activity until then. Of course that is a risky assumption to make...
Sometimes even short delays in starting treatment can have catastrophic consequences. Who knows when the next relapse is going to occur and how severe it is going to be. I have a few patients who have ended up very disabled having had relapses due to delays in starting treatment. My particular concern are patients with MS waiting to be treated with AHSCT. Delays in getting AHSCT started is a recurring issue in the UK.
Such an excellent article. I was diagnosed in 2008. A combination of pride, hopium. , and lack of understanding has defined my treatment choices. I remember the neurologist very early on telling me that I should go on a disease modifying treatment as soon as possible I interpreted his advice as scolding and contemptuous. I was embarrassed and I was and confused. That was my first meeting and when I hesitated he transferred me back to my GP’s care. I later found the MS clinic but only for relapse treatment and then Rebif. In the beginning of my MS journey I walked into MS believing my strength and positivity would somehow add to my protection.
Time has swiftly changed and enhanced the treatment options I appreciate your inclusion of us at this stage of our MS.
OK, throwing in a quick question. I am a excellent responder to Fampyra. I have limited insurance and it is too expensive ( in Canada) I will go on 4-aminopyrigine Will this provide a decent efficacy- any tips or tricks to help stabilize the blood concentrations?
The inflammation you provide is invaluable.
Jeebus - information * not inflammation. Autocorrect agro.
Thank you so much for all the informations you share with us. Its always so clear even for someone who is not ( at all ) a scientific minded person.
I'm wondering what do you think about the prognosis of a newly diagnosted on an anti cd20 first line and without any disabling or oligoclonal bands on the spinal tap ? ( yes this is my case ... )
I would like to know if you agreed with Stephen Hauser and other specialists who says that we can resonably be confident about a future with no disabling for those whose ms is starting nowadays... ( seeking for hope ) ...
And thanks again from France :)
Re: "oligoclonal bands"
We have no idea if anti-CD20 works in OCB-ve MS. OCB-ve subjects were excluded from the PPMS trial and the number in the relapsing OPERA 1&2 trials would be very small.
I suspect OCB-ve MS will turn out not to be MS when we have a diagnostic test for the disease.
Thank you.... do you have an idea about how close we are from having a remyelination therapeutic ?
Some say this can be available in around 6 or 7 years, alot talks about 10 years. Yesterday i heard " around 10 to 15 years " ...
Do you have a personal idea ?
I love my pills but would not want my child put on Fingolimod!
It is relatively safe and so convenient, especially as I am phobic about needles - hence I fought to stay on it even when my white blood cells were dangerously low (& risked Covid).
BUT I still deteriorate (due to MS? or Covid?) and am now kind of stuck on it ... as I dare not come off it because of the rebound risk.
So whilst at my age I don't necessarily regret my choice, if it was my son I would politely but firmly request the best long term treatment.
The article is a must-read for anybody newly diagnosed, whatever their age, to understand in simple terms what lies ahead and the help and advice that is available.
I fall into the NEIDA category and my Neurologist, who has recently retired, has not offered me any DMTs. I have been super-lucky to lead an active lifestyle with only small moderations to facilitate any walking disruptions and fatigue.
I do not get to meet my new Neurologist until September 2025. Apparently, I am allowed to contact my MS Nurse if I need anything. Fingers crossed I am blessed with good health.