To switch to alemtuzumab or cladribine you would need to have had a relapse and new lesions on your MRI. You would not be eligible for AHSCT as DMF is not classified as a high-efficacy DMT.
I also have identical features, except I have managed to reduce my working hours rather than stop altogether. I was taken off Tecfidera at the start of the pandemic, as my Lymphocyte count was very low (0.4). I am still waiting for the count to raise enough to move to Aubagio.
I am fortunate to have two very supportive MS nurses and was referred to the Neuro OT service. His advice has been brilliant, making me consider the Boom/Bust effect and the three Ds - Delay, Delegate or Dump. He has recommended planning in periods of 'rest' throughout my week but this isn't always practical. Having said that, just being mindful of this need has forced me to stop every now and again, before I reach Bust! The OT also recommended that after an illness or infection, I do not push myself to be better too quickly. Rest, be kind and pace yourself! Probably sounds obvious advice for many, but as a working Mum of two children with an ageing mother.... I've not had the brain space or time to consider my own needs.
This sounds familiar to me too! Cladribine is the DMT I have requested to switch from Ocrelizumab. I have progression but nothing showing on MRI! I have a one to one in Jan to discuss & I'm trying to gather all the info I can, as I know my Neurologist will not be able to offer me this drug. Although, I have never been given results of an EDSS test, or any other tests (apart from diagnosis - lumbar puncture) to establish, what is going on! If and I'm guessing it is active MS and due to my age along with other ailments/menopause, that I'll have to build a good case. May be I'll ask to go in front of the committee and fight my own case and get some clarity as to why you have to get so much more worse, before you can be offered the best treatments available!
Almost identical to me - 48yoF, diagnosed RRMS 2020 but symptomatic since 2010 following swine flu. Was an ICU & theatre/PACU nurse now unable to work due to slow reactions, fatigue and general slowed cognitive processing. I’m still physically pretty robust but with constant sensory symptoms including TN and tinnitus.
Also on Tecfidera but recently had a routine MRI that showed a new small lesion which my neurologist theorises appeared between diagnostic MRI and starting the dmt. So I’m getting rescanned in a few months and a decision will be made then with regard to possibly changing dmt.
I haven’t had a relapse since diagnosis and have had two clear lumbar punctures (no O bands either time).
Sounds quite similar to me though I had a smaller gap between onset and diagnosis- two relapses 6 months apart, nothing for three years then three relapses in March, April and October 2017 before I was eventually diagnosed in November 2017. I too run long distances and work in a demanding job. Cognitively I don't think things are too bad for me yet but I do have my bad days. At diagnosis I was offered Alemtuzumab but opted for DMF.
I wonder - is there a possibility to go private with treatment if we don't meet NHS criteria? Like, if I wanted to switch from DMF to Cladribine for instance.
Oh yes, that could very well be me. I am still very easily distracted, and cannot do 2 things at once. I love your term " Smoldering MS" for that describes it perfectly. I had been diagnosed around 30 years > or < before, and I began to feel much more fatigued, distracted, easily irritated, which I realized later were my reaction to reaction to recognizing my cognitive issues. I chose early medical retirement from the University at the end of the semester in December. I moved back to my home state, seeking that cooler environment my Neurologist recommended,
got a full work up at the MS center at a near-by hospital, and a new label...Secondary Progressive MS. but it appears to be inactive???? Yes, I do have Smoldering MS, and it is the Pits! My symptoms continue to worsen, there are no medications to treat it, IT isn't active, but I may, or may not, get new symptoms, that you NEVER imagined in your wildest dreams or nightmares, or even thought the human body was capable of, or you may have parts that will be so numb that you will have to look occasionally and make sure they are still attached to your body. Secondary Progressive MS was just there, doing nothing but still messing up my life every single day! Smoldering MS, feels more promising, as though it could erupt and become something wonderful! Maybe Smoldering MS will let me feel my feet again!
Here is my grain of salt: alemtuzumab is harsh, I had it a few weeks ago and am suffering from unexplained night sweats, fatigue that I had never seen before, etc....but it is probably the strongest depleter after HSCT.. Now would you rather have this at 49 (next year), or 59, or 69?
I feel that I was kept on Betaseron for far too long (over 10 years) before starting Ocrevus. I was given the same "no interval change" BS on my MRI every year for 20 years, but any lay person can see that my 50 year old brain looks like it's 80, and one can no longer count or delineate lesions on the scan. Amazed I am not bedridden every time I see my MRI. Cervical and thoracic lesions, too.
Prof. Giovannoni, you seem to be forgetting that we lack any treatments for post-covid acute syndrome, a serious condition that may affect up to 30% of people who are infected with covid. This has been my experience, sadly. Despite 3 doses of the vaccine and pushing back the date if my infusion, I did not generate COVID anti-bodies due to ocrelizumab. I caught COVID when an outbreak hit my 10-year old daughter’s school in september. My intact t-cells quickly cleared the infection and my initial symptoms were mild. However, I have been living with intense fatigue for the past 3 months and have been on medical leave. PACS has disabled me in a way that MS never had. Don’t get me wrong - I’m in favour of induction and aggresive treatments for MS. But I would not simply brush aside the risks of a COVID infection unti we have diagnostic tests and treatmenrs for PACS.
I have a similar story to that in your case study- diagnosed with RRMS in May 2018 (I was 38), started on Tecfidera in November 2018. Annual MRIs show no new lesions or disease activity but I have noticed a very definite worsening of mobility, speech, strength and balance. I would like to volunteer for the SIZOMUS trial. What’s the best way?
Hi I’m 53 and was diagnosed in may 2000. initially with RRMS and transitioned to ‘SPMS’ from I suspect 2015. I was on beta interferon from 2002- 2014 then switched to tysabri, developed antibodies so was on Gylenya from 2015- late 2018. I was then considered ineligible for DMT’s. Arter much research eventually found a neurologist who agreed that rituximab would be an option based on the Basel study and it’s widespread use in Sweden for use in SPMS. The vast majority of my MS activity and damage is spinal, hence symptoms are largely mobility based. I am keen to maintain function for as long as possible. I would be more than willing to participate in the study outlined in your video assuming I meet the necessary criteria. How would I apply.
I am also 48 and have MS for 18 years. I was on Avonex for 4 years then stopped. I was off medication for several years and then had a bad relapse involving sensation in my left hand. I went on Copaxone for about 6 months, but the shots were incredibly painful and I had an allergic reaction. I went back on Avonex for 3 years and stopped. I've been off meds for 4 years, but my doctor wants me to do Ocrevus. I said no so now being put on Mavenclad. I am terrified of side effects. I would rather do something less harsh. I've been stable too, but I do think I've declined more cognitively and have a bit more weakness. I have 29 lesions, my spinal cord is impacted, and I do have some brain atrophy and 3 black holes in my brain. With all of that being said, is it possible I could still benefit from ANY medication and could I go on one of the less scary meds?
She may have had at least one relapses without MRI detected activity, is that possible? If this was the case would she be eligible for vertical switch? Regarding brain fog I had it after my last relapse and it lasted some months. It went away completely after starting ocrelizumab, probably it switched inflammation off.
Has this lady tried HRT? Many of the symptoms she describes are exactly what we see in the peri menopause and respond really well to HRT. You don’t need to have stopped your periods or have deranged hormones blood tests. Just being 48 is enough of a reason. Well worth considering IMO.
I also have identical features, except I have managed to reduce my working hours rather than stop altogether. I was taken off Tecfidera at the start of the pandemic, as my Lymphocyte count was very low (0.4). I am still waiting for the count to raise enough to move to Aubagio.
I am fortunate to have two very supportive MS nurses and was referred to the Neuro OT service. His advice has been brilliant, making me consider the Boom/Bust effect and the three Ds - Delay, Delegate or Dump. He has recommended planning in periods of 'rest' throughout my week but this isn't always practical. Having said that, just being mindful of this need has forced me to stop every now and again, before I reach Bust! The OT also recommended that after an illness or infection, I do not push myself to be better too quickly. Rest, be kind and pace yourself! Probably sounds obvious advice for many, but as a working Mum of two children with an ageing mother.... I've not had the brain space or time to consider my own needs.
I tripped while walking and thinking about something else the other day which means a bill for a veneer on one of my front teeth.
This sounds familiar to me too! Cladribine is the DMT I have requested to switch from Ocrelizumab. I have progression but nothing showing on MRI! I have a one to one in Jan to discuss & I'm trying to gather all the info I can, as I know my Neurologist will not be able to offer me this drug. Although, I have never been given results of an EDSS test, or any other tests (apart from diagnosis - lumbar puncture) to establish, what is going on! If and I'm guessing it is active MS and due to my age along with other ailments/menopause, that I'll have to build a good case. May be I'll ask to go in front of the committee and fight my own case and get some clarity as to why you have to get so much more worse, before you can be offered the best treatments available!
Almost identical to me - 48yoF, diagnosed RRMS 2020 but symptomatic since 2010 following swine flu. Was an ICU & theatre/PACU nurse now unable to work due to slow reactions, fatigue and general slowed cognitive processing. I’m still physically pretty robust but with constant sensory symptoms including TN and tinnitus.
Also on Tecfidera but recently had a routine MRI that showed a new small lesion which my neurologist theorises appeared between diagnostic MRI and starting the dmt. So I’m getting rescanned in a few months and a decision will be made then with regard to possibly changing dmt.
I haven’t had a relapse since diagnosis and have had two clear lumbar punctures (no O bands either time).
Sounds quite similar to me though I had a smaller gap between onset and diagnosis- two relapses 6 months apart, nothing for three years then three relapses in March, April and October 2017 before I was eventually diagnosed in November 2017. I too run long distances and work in a demanding job. Cognitively I don't think things are too bad for me yet but I do have my bad days. At diagnosis I was offered Alemtuzumab but opted for DMF.
I wonder - is there a possibility to go private with treatment if we don't meet NHS criteria? Like, if I wanted to switch from DMF to Cladribine for instance.
Oh yes, that could very well be me. I am still very easily distracted, and cannot do 2 things at once. I love your term " Smoldering MS" for that describes it perfectly. I had been diagnosed around 30 years > or < before, and I began to feel much more fatigued, distracted, easily irritated, which I realized later were my reaction to reaction to recognizing my cognitive issues. I chose early medical retirement from the University at the end of the semester in December. I moved back to my home state, seeking that cooler environment my Neurologist recommended,
got a full work up at the MS center at a near-by hospital, and a new label...Secondary Progressive MS. but it appears to be inactive???? Yes, I do have Smoldering MS, and it is the Pits! My symptoms continue to worsen, there are no medications to treat it, IT isn't active, but I may, or may not, get new symptoms, that you NEVER imagined in your wildest dreams or nightmares, or even thought the human body was capable of, or you may have parts that will be so numb that you will have to look occasionally and make sure they are still attached to your body. Secondary Progressive MS was just there, doing nothing but still messing up my life every single day! Smoldering MS, feels more promising, as though it could erupt and become something wonderful! Maybe Smoldering MS will let me feel my feet again!
Here is my grain of salt: alemtuzumab is harsh, I had it a few weeks ago and am suffering from unexplained night sweats, fatigue that I had never seen before, etc....but it is probably the strongest depleter after HSCT.. Now would you rather have this at 49 (next year), or 59, or 69?
I feel that I was kept on Betaseron for far too long (over 10 years) before starting Ocrevus. I was given the same "no interval change" BS on my MRI every year for 20 years, but any lay person can see that my 50 year old brain looks like it's 80, and one can no longer count or delineate lesions on the scan. Amazed I am not bedridden every time I see my MRI. Cervical and thoracic lesions, too.
Prof. Giovannoni, you seem to be forgetting that we lack any treatments for post-covid acute syndrome, a serious condition that may affect up to 30% of people who are infected with covid. This has been my experience, sadly. Despite 3 doses of the vaccine and pushing back the date if my infusion, I did not generate COVID anti-bodies due to ocrelizumab. I caught COVID when an outbreak hit my 10-year old daughter’s school in september. My intact t-cells quickly cleared the infection and my initial symptoms were mild. However, I have been living with intense fatigue for the past 3 months and have been on medical leave. PACS has disabled me in a way that MS never had. Don’t get me wrong - I’m in favour of induction and aggresive treatments for MS. But I would not simply brush aside the risks of a COVID infection unti we have diagnostic tests and treatmenrs for PACS.
I'm not based in the UK. Is it possible to take part in SIZOMUS from a different country?
I have a similar story to that in your case study- diagnosed with RRMS in May 2018 (I was 38), started on Tecfidera in November 2018. Annual MRIs show no new lesions or disease activity but I have noticed a very definite worsening of mobility, speech, strength and balance. I would like to volunteer for the SIZOMUS trial. What’s the best way?
I would look at HRT. The symptoms could well be low estrogen. Louise Newson has a great podcast and app called balance.
Hi I’m 53 and was diagnosed in may 2000. initially with RRMS and transitioned to ‘SPMS’ from I suspect 2015. I was on beta interferon from 2002- 2014 then switched to tysabri, developed antibodies so was on Gylenya from 2015- late 2018. I was then considered ineligible for DMT’s. Arter much research eventually found a neurologist who agreed that rituximab would be an option based on the Basel study and it’s widespread use in Sweden for use in SPMS. The vast majority of my MS activity and damage is spinal, hence symptoms are largely mobility based. I am keen to maintain function for as long as possible. I would be more than willing to participate in the study outlined in your video assuming I meet the necessary criteria. How would I apply.
Regards
RV
I am also 48 and have MS for 18 years. I was on Avonex for 4 years then stopped. I was off medication for several years and then had a bad relapse involving sensation in my left hand. I went on Copaxone for about 6 months, but the shots were incredibly painful and I had an allergic reaction. I went back on Avonex for 3 years and stopped. I've been off meds for 4 years, but my doctor wants me to do Ocrevus. I said no so now being put on Mavenclad. I am terrified of side effects. I would rather do something less harsh. I've been stable too, but I do think I've declined more cognitively and have a bit more weakness. I have 29 lesions, my spinal cord is impacted, and I do have some brain atrophy and 3 black holes in my brain. With all of that being said, is it possible I could still benefit from ANY medication and could I go on one of the less scary meds?
She may have had at least one relapses without MRI detected activity, is that possible? If this was the case would she be eligible for vertical switch? Regarding brain fog I had it after my last relapse and it lasted some months. It went away completely after starting ocrelizumab, probably it switched inflammation off.
Has this lady tried HRT? Many of the symptoms she describes are exactly what we see in the peri menopause and respond really well to HRT. You don’t need to have stopped your periods or have deranged hormones blood tests. Just being 48 is enough of a reason. Well worth considering IMO.