Has a treatment target been discussed with you including the need to rebaseline your disease activity? Have the concepts of preventing end-organ damage and brain volume loss or atrophy been broached?
It seems that my neurologist has decided that no new mri activity is successful treatment. I clearly want to stop all worsening of disability but he seems to think that it’s acceptable to have limited worsening disability and no new activity on my MRI. I’d like to have a total reevaluation of my treatment plan- from DMT to BMT to ? How would you suggest I achieve this?
Wife was adamant on Kesimpta/Ocrevus as studies show better outcomes when started from onset, despite her ms being "mild" ATM so she didn't really give a chance for her msologist to push her a certain way, he agreed with her approach as long as she understood the risks. She is to have an MRI to baseline once she starts treatment. If I may ask why are high efficacy treatments like Ocrevus/Kesimpta seen as higher risk when tecfidera a medium efficacy treatment comes with more side effects, the risk of PML etc. In my pov it doesn't make sense risking a treatment that is not as effective and it's quite heavy side effect wise.
This is very interesting, I think I know understand why I am having an MRI 6 months after the last dose (year 2) of cladribine. However, I wonder what will happen if I develop MS activity in year 3 or 4.
The only aim my neuro has is to reduce the number of relapses. Not even aiming for zero relapses, just reducing them. After getting 2 second opinions, my options are to move to London for higher efficacy drugs, or HSCT privately. Very frustrating!
Prof, I, like many others no doubt, am in the constant battle with my neurology team to make sure that my disease is being managed appropriately (it isn't). When i asked about switching to an IRT due to relapses, the better BVL data and to reduce the chances of progression to Secondary MS, the only gauge was MRI evidence. Even then, i was told it may not be enough. As a result i am having to row my own boat to a degree, which is unbelievable really. Anyways, when considering the switching between the top tier of DMTs in order to move up the NEDA stakes, how can this judgement call really be made? for instance, if someone fails ocrevus and moves to lemtrada, is the idea that that particular patient may be better served by a t-cell therapy? do you suggest clad or HSCT because it gets into the CNS? seems a bit trial and error but the margin for error is quite slim given the consequences for the patient
Thought provoking. Am on Fingolymod (which has stopped the relapses for 5 years - hooray!) The latest MRI just came with just a 1 line "interpretation" of no new activity. Of course that seems good so neurologist was happy to continue the DMT. No mention of brain shrinkage etc being monitored ... so the MRI report feels a bit basic to me. Can I go back to the MRI team and ask them to do the analysis Prof G mentions? Or as I have copies of the scan do I have to go private to get the sort of extra level of analysis Prof G describes? Or if I wait a year for my next annual review can I request it from the NHS neurologist (without offending them!)?
Thanks for this, an interesting post. This has not been my experience of starting treatment on the NHS and I’d be interested to know whether I’m an outlier or my experience in commonplace.
I was dx in 2018 following a 2nd relapse of ON. In 2020, an MRI showed new lesions and treatment with interferons was suggested. The objective given was to try and keep my as well as possible for 10 years (34 years old at the time). I pushed for Ocrevus and so treatment was delayed due to Covid and denied by the MDT panel this year. No reason was given but I see from a letter from my consultant to my GP that it was a risk/benefit decision based on the course of my disease. No prognosis has ever been discussed with me, but looking at your checklist I’m hoping that it is relatively good.
I’m now waiting to start Plegridy. Following a complaint to the hospital the consultant agreed to do MRI scans for 2 years after starting treatment. I assume that after that I will stay on Plegridy until I have side effects that necessitate a switch or a clinical relapse.
I agree with much of what you write, but it doesn’t seem to happen in practice. I’m now concerned that in pushing for Ocrevus I’ve delayed starting any DMT unnecessarily. I also feel sometimes that it might be better not knowing as much when that knowledge isn’t able to be translated in to action.
Another excellent post prof. Thank you. I understand that new activity with an IRT is a reason to re-dose, but what about early activity after an IRT before a subsequent dose can be given?
When I started ocrelizumab first line one year ago it was not discussed in these terms. The neurologist said we should have started with a high efficacy treatment to prevent the disease from going in the degenerative phase. So no information on rebaselining, BVL etc. I asked the MRI radiologist if they could measure brain volume but they told me they don't. Maybe I should look for an open source software and do it myself... even just for curiosity given the variability of the measures. I asked the neurologist for NFL but I was told they don't do the measurement because it is still not routine and that it is done only for research purposes in another place in my city. So we are a bit blind on some outcomes and we rely on clinical trials data, goodness of the DMT, MRI and clinical assessment.
It seems that my neurologist has decided that no new mri activity is successful treatment. I clearly want to stop all worsening of disability but he seems to think that it’s acceptable to have limited worsening disability and no new activity on my MRI. I’d like to have a total reevaluation of my treatment plan- from DMT to BMT to ? How would you suggest I achieve this?
Wife was adamant on Kesimpta/Ocrevus as studies show better outcomes when started from onset, despite her ms being "mild" ATM so she didn't really give a chance for her msologist to push her a certain way, he agreed with her approach as long as she understood the risks. She is to have an MRI to baseline once she starts treatment. If I may ask why are high efficacy treatments like Ocrevus/Kesimpta seen as higher risk when tecfidera a medium efficacy treatment comes with more side effects, the risk of PML etc. In my pov it doesn't make sense risking a treatment that is not as effective and it's quite heavy side effect wise.
This is very interesting, I think I know understand why I am having an MRI 6 months after the last dose (year 2) of cladribine. However, I wonder what will happen if I develop MS activity in year 3 or 4.
The only aim my neuro has is to reduce the number of relapses. Not even aiming for zero relapses, just reducing them. After getting 2 second opinions, my options are to move to London for higher efficacy drugs, or HSCT privately. Very frustrating!
Prof, I, like many others no doubt, am in the constant battle with my neurology team to make sure that my disease is being managed appropriately (it isn't). When i asked about switching to an IRT due to relapses, the better BVL data and to reduce the chances of progression to Secondary MS, the only gauge was MRI evidence. Even then, i was told it may not be enough. As a result i am having to row my own boat to a degree, which is unbelievable really. Anyways, when considering the switching between the top tier of DMTs in order to move up the NEDA stakes, how can this judgement call really be made? for instance, if someone fails ocrevus and moves to lemtrada, is the idea that that particular patient may be better served by a t-cell therapy? do you suggest clad or HSCT because it gets into the CNS? seems a bit trial and error but the margin for error is quite slim given the consequences for the patient
Thought provoking. Am on Fingolymod (which has stopped the relapses for 5 years - hooray!) The latest MRI just came with just a 1 line "interpretation" of no new activity. Of course that seems good so neurologist was happy to continue the DMT. No mention of brain shrinkage etc being monitored ... so the MRI report feels a bit basic to me. Can I go back to the MRI team and ask them to do the analysis Prof G mentions? Or as I have copies of the scan do I have to go private to get the sort of extra level of analysis Prof G describes? Or if I wait a year for my next annual review can I request it from the NHS neurologist (without offending them!)?
Thanks for this, an interesting post. This has not been my experience of starting treatment on the NHS and I’d be interested to know whether I’m an outlier or my experience in commonplace.
I was dx in 2018 following a 2nd relapse of ON. In 2020, an MRI showed new lesions and treatment with interferons was suggested. The objective given was to try and keep my as well as possible for 10 years (34 years old at the time). I pushed for Ocrevus and so treatment was delayed due to Covid and denied by the MDT panel this year. No reason was given but I see from a letter from my consultant to my GP that it was a risk/benefit decision based on the course of my disease. No prognosis has ever been discussed with me, but looking at your checklist I’m hoping that it is relatively good.
I’m now waiting to start Plegridy. Following a complaint to the hospital the consultant agreed to do MRI scans for 2 years after starting treatment. I assume that after that I will stay on Plegridy until I have side effects that necessitate a switch or a clinical relapse.
I agree with much of what you write, but it doesn’t seem to happen in practice. I’m now concerned that in pushing for Ocrevus I’ve delayed starting any DMT unnecessarily. I also feel sometimes that it might be better not knowing as much when that knowledge isn’t able to be translated in to action.
Another excellent post prof. Thank you. I understand that new activity with an IRT is a reason to re-dose, but what about early activity after an IRT before a subsequent dose can be given?
When I started ocrelizumab first line one year ago it was not discussed in these terms. The neurologist said we should have started with a high efficacy treatment to prevent the disease from going in the degenerative phase. So no information on rebaselining, BVL etc. I asked the MRI radiologist if they could measure brain volume but they told me they don't. Maybe I should look for an open source software and do it myself... even just for curiosity given the variability of the measures. I asked the neurologist for NFL but I was told they don't do the measurement because it is still not routine and that it is done only for research purposes in another place in my city. So we are a bit blind on some outcomes and we rely on clinical trials data, goodness of the DMT, MRI and clinical assessment.