Great article and interesting that most 'subjects' are pursuing the Alemtuzumab or HSCT route. On these, what is the theory behind halting the progression to SPMS and are there any studies that have tested this over a long period? is the data for HSCT different from Alemtuzumab on this particular disease marker?
I'm surprised to read that you consider NICE guidelines to be legal obligations! What about the times when it says you can't prescribe? As professionals do we not retain our right to treat according to our opinion and conscience, referring on to another specialist if need be? I do not think that a NICE determination compels me to produce a prescription.
Another excellent case study and encouragement. I didn't know that if you met the NICE criteria a neurologist has a legal obligation to prescribe. It might have saved me transferring from a risk averse neurologist and getting stuck on Fingolimod at my new centre. But fair dos through just about to start cladribine aftet a relapse. Neurologist number 1 would not have agreed
It was my understanding that Lemtrada can not be prescribed as a first line therapy anymore, following the recent EMA recommendations. Did I get this wrong? If I got this right, what constitutes failure on other heDMTs like Tysabri? New MRI evidence of disease activity after 6 months of use? What about subjective feelings such as cognitive impairment, memory issues becoming more prominent and the like?
Dear Sir, you mention that AHSCT and Lemtrada are more effective at turning off smouldering MS and slowing down brain volume loss, could you please let us know if there is any specific conditioning regimen you refer to when you say HSCT? Should the conditioning regimen to be used be decided based on what type of MS the patient has? How effective is Cladribine at turning off smouldering MS? If an IRT doesn't ablate the innate immune system, should it qualify as an IRT? Thanks and regards.
I’m in a similar situation so this is very interesting.
I had ON in 2015 and again in 2018 which led to my Dx. I then had a scan last year which showed 2 new lesions at which point I was offered Plegridy. I pushed for Ocrelizumab but this has just led to a year without treatment as my neurologist was initially unresponsive and later agreed to a 2nd opinion but wasn’t able to share the scans so no opinion was offered.
Apparently my case was discussed at the regional MDT but they decided against prescribing it. No information has been provided on the reasons for the decision and there’s no way to appeal. My latest scan shows another new lesions.
I feel totally helpless. I’ve researched the treatments and am happy to take the risks of a higher efficacy treatment. From my understanding I should be eligible for that treatment but have no way of accessing it. I’m also concerned that if I start Plegridy in the meantime I’m then on the escalation path with no way to get off.
Great article and interesting that most 'subjects' are pursuing the Alemtuzumab or HSCT route. On these, what is the theory behind halting the progression to SPMS and are there any studies that have tested this over a long period? is the data for HSCT different from Alemtuzumab on this particular disease marker?
I'm surprised to read that you consider NICE guidelines to be legal obligations! What about the times when it says you can't prescribe? As professionals do we not retain our right to treat according to our opinion and conscience, referring on to another specialist if need be? I do not think that a NICE determination compels me to produce a prescription.
Another excellent case study and encouragement. I didn't know that if you met the NICE criteria a neurologist has a legal obligation to prescribe. It might have saved me transferring from a risk averse neurologist and getting stuck on Fingolimod at my new centre. But fair dos through just about to start cladribine aftet a relapse. Neurologist number 1 would not have agreed
Well, this was a very good read.
It was my understanding that Lemtrada can not be prescribed as a first line therapy anymore, following the recent EMA recommendations. Did I get this wrong? If I got this right, what constitutes failure on other heDMTs like Tysabri? New MRI evidence of disease activity after 6 months of use? What about subjective feelings such as cognitive impairment, memory issues becoming more prominent and the like?
Dear Sir, you mention that AHSCT and Lemtrada are more effective at turning off smouldering MS and slowing down brain volume loss, could you please let us know if there is any specific conditioning regimen you refer to when you say HSCT? Should the conditioning regimen to be used be decided based on what type of MS the patient has? How effective is Cladribine at turning off smouldering MS? If an IRT doesn't ablate the innate immune system, should it qualify as an IRT? Thanks and regards.
I’m in a similar situation so this is very interesting.
I had ON in 2015 and again in 2018 which led to my Dx. I then had a scan last year which showed 2 new lesions at which point I was offered Plegridy. I pushed for Ocrelizumab but this has just led to a year without treatment as my neurologist was initially unresponsive and later agreed to a 2nd opinion but wasn’t able to share the scans so no opinion was offered.
Apparently my case was discussed at the regional MDT but they decided against prescribing it. No information has been provided on the reasons for the decision and there’s no way to appeal. My latest scan shows another new lesions.
I feel totally helpless. I’ve researched the treatments and am happy to take the risks of a higher efficacy treatment. From my understanding I should be eligible for that treatment but have no way of accessing it. I’m also concerned that if I start Plegridy in the meantime I’m then on the escalation path with no way to get off.