This patient on natalizumab has no evident disease activity, but progressive and accelerated brain volume loss. She is keen to switch to HSCT or alemtuzumab. What should she do?
Can i ask a question about 'chemo brain' - does this affect everyone who has chemo or is it the specific agents used in HSCT for MS? i know we have less brain to lose than the average joe. Also, i am sure that i read a post from MD that the initial shrinkage is exaggerated so that 2% of BVL is not necessarily equivalent to 10 years of 0.2?
Chemo brain is more likely with myeloablative compared to non-myeloablative protocols. However, it is seen with most standard protocols. Chemo brain is also worse the older you are and the more advanced your MS is. Why? Brain reserve also protects from chemobrain. The message here is if you want to be treated with HSCT you need to have it earlier than later..
the retrospective qualification is an interesting approach. By the same virtue, would someone eligible for alemtuzumab as a first line agent in 2015/16/17/18 be able to make a case for it now? i suspect not
Many thanks for this really informative case study. Do you think that there is any place for starting natalizumab in 2021 in patients with HA or rapidly evolving severe MS or should everyone (who desires it) be started on alemtuzumab? Can natalizumab be beneficial for patients considered lower risk?
Natalizumab is a very good DMT and has a definite role to play in the management of MS. We are doing the so-called #AttackMS trial to test natalizumab very early on in CIS.
At the end of the day, it needs to be about patient choice. The dilemma, in this case, would not have arisen if she had not insisted on getting her brain volume checked and reported on. What you don't measure and see you can't act on. Saying this I am aware of many of my patients on natalizumab who are NEDA having obvious BVL, but we don't discuss it because what do we do about it? This is why we are doing the add-on SIZOMUS trial to test add-on treatments to target smouldering MS.
Honest question: how do people envision the logistics of HSCT abroad when delta is surging? How do you get home safely without an immune-system to speak of?
Personally I would seriously consider HSCT but only locally for that reason- alas I am unlikely to be eligible.
Thank you Gavin - lots of questions raised through the patient's choice and current DMT, prior and to date. I didn't realise that you don't measure the BVL in a patient's journey with MS, on or off therapy. This info would help patients come to a decision quicker about treatment therapy, if this was discussed more on diagnosis or at least if you are as a patient in a position to qualify for one of the more powerful DMTs. There is I would hope a study or knowledge of how bvl is a normal person with age - i.e. if a person develops another neuro disease. As this lady has requested her bvl & obvs has the capacity to know what impact that could have on her later on in life - surely this info should be discussed with all pwMS, more especially the younger you are and the more ageing pwMS too!
After 4 mos on Tysabri I started to develop worsening disequilibrium, tremors, ataxia, and cerebellum signs without new lesion but mri did show cerebellum atrophy. My MS specialists all swore up and down that it was not due to the Tysabri and I should keep taking it, fast forward a year of treatments and I developed an ocular tremor as well, went to the ED because I was scared to death is was PML even though I am JCV negative, I read about the GCN variant and was concerned. Everyone blew off my concerns for worsening and blamed possible genetic cerebellum atrophy or FND, even suggested I was faking and needed a psych consult. Decided to come off Tysabri anyway and 10 weeks off all my cerebellum symptoms are slowly getting better. I’m not on a new drug yet, awaiting my follow up mri but wanted to see if you had ever experienced this with a natalizumab pt even though “stable with no new lesions” I was significantly clinically declining and I think it was more related to the drug.
Can i ask a question about 'chemo brain' - does this affect everyone who has chemo or is it the specific agents used in HSCT for MS? i know we have less brain to lose than the average joe. Also, i am sure that i read a post from MD that the initial shrinkage is exaggerated so that 2% of BVL is not necessarily equivalent to 10 years of 0.2?
Chemo brain is more likely with myeloablative compared to non-myeloablative protocols. However, it is seen with most standard protocols. Chemo brain is also worse the older you are and the more advanced your MS is. Why? Brain reserve also protects from chemobrain. The message here is if you want to be treated with HSCT you need to have it earlier than later..
the retrospective qualification is an interesting approach. By the same virtue, would someone eligible for alemtuzumab as a first line agent in 2015/16/17/18 be able to make a case for it now? i suspect not
I suspect not as well. We have tried this, but not been given the greenlight.
Many thanks for this really informative case study. Do you think that there is any place for starting natalizumab in 2021 in patients with HA or rapidly evolving severe MS or should everyone (who desires it) be started on alemtuzumab? Can natalizumab be beneficial for patients considered lower risk?
Natalizumab is a very good DMT and has a definite role to play in the management of MS. We are doing the so-called #AttackMS trial to test natalizumab very early on in CIS.
At the end of the day, it needs to be about patient choice. The dilemma, in this case, would not have arisen if she had not insisted on getting her brain volume checked and reported on. What you don't measure and see you can't act on. Saying this I am aware of many of my patients on natalizumab who are NEDA having obvious BVL, but we don't discuss it because what do we do about it? This is why we are doing the add-on SIZOMUS trial to test add-on treatments to target smouldering MS.
Honest question: how do people envision the logistics of HSCT abroad when delta is surging? How do you get home safely without an immune-system to speak of?
Personally I would seriously consider HSCT but only locally for that reason- alas I am unlikely to be eligible.
I agree at the moment AHSCT is very risky and is another example of how COVID-19 is impacting the care of pwMS.
Thank you Gavin - lots of questions raised through the patient's choice and current DMT, prior and to date. I didn't realise that you don't measure the BVL in a patient's journey with MS, on or off therapy. This info would help patients come to a decision quicker about treatment therapy, if this was discussed more on diagnosis or at least if you are as a patient in a position to qualify for one of the more powerful DMTs. There is I would hope a study or knowledge of how bvl is a normal person with age - i.e. if a person develops another neuro disease. As this lady has requested her bvl & obvs has the capacity to know what impact that could have on her later on in life - surely this info should be discussed with all pwMS, more especially the younger you are and the more ageing pwMS too!
I’ve been told measuring BVL isn’t possible. Maybe my location?
After 4 mos on Tysabri I started to develop worsening disequilibrium, tremors, ataxia, and cerebellum signs without new lesion but mri did show cerebellum atrophy. My MS specialists all swore up and down that it was not due to the Tysabri and I should keep taking it, fast forward a year of treatments and I developed an ocular tremor as well, went to the ED because I was scared to death is was PML even though I am JCV negative, I read about the GCN variant and was concerned. Everyone blew off my concerns for worsening and blamed possible genetic cerebellum atrophy or FND, even suggested I was faking and needed a psych consult. Decided to come off Tysabri anyway and 10 weeks off all my cerebellum symptoms are slowly getting better. I’m not on a new drug yet, awaiting my follow up mri but wanted to see if you had ever experienced this with a natalizumab pt even though “stable with no new lesions” I was significantly clinically declining and I think it was more related to the drug.