Refusenik

R

Barts-MS rose-tinted-odometer: ★★

She is only 24 years of age; a graduate trainee in a marketing company. She has a promising future ahead of her. She lives in London and has a long term partner; they met at University. She knows he is the one for her and they are planning to get engaged in the next 1 to 2 years. Like most graduate trainees they find London expensive and share a house with four other people. She has found lockdown very stressful not because she has had to work from home with four other people, but because she was diagnosed with MS in February last year. 

Despite starting DMF (Tecfidera) in June 2020, she had a very disabling relapse over the Christmas period with lower limb weakness and new-onset bladder symptoms. She has also noted a fine tremor in her right hand. Her latest MRI showed several new lesions and a large lesion in her thoracic spinal cord. Her consultant neurologist has offered her ocrelizumab. However, after doing her own online research including reading The MS-Blog (formerly known as the Barts-MS blog) she has asked to be treated with alemtuzumab. Her consultant has said no and pointed out their centre has virtually stopped using alemtuzumab because as a treatment it is too risky and there are much safer options.

Out of desperation this patient went to see a colleague of mine in private who said of course she can have alemtuzumab and she has now been referred to our centre for treatment. We are now in the process of doing the baseline bloods and will hopefully get this patient treated with her first course of alemtuzumab in the next few weeks. Tragically this poor woman has lost time. What would happen if in the interim she has a further catastrophic spinal cord relapse that leaves her paralysed? Who would be responsible? 

I am beginning to refer to my colleagues who are not prepared to offer and use alemtuzumab and HSCT as the ‘refuseniks’. What they don’t realise is that they are putting themselves and their institutions at risk from legal challenge. How come? When NICE (National Institute of Health and Care Excellence) was created it was done so via an act of parliament. NICE’s primary aim was to get rid of the curse of postcode prescribing and variable access to treatments. Therefore if a therapy has been NICE approved the NHS has a legal obligation to offer people a specific treatment if they are eligible for that treatment. Therefore, in the case above her previous consultant is breaking the law and putting not only him or herself at risk of a legal challenge, but the relevant NHS Trust as well.

In 2021 why are neurologists still so paternalistic? Not allowing patients to choose their own treatment is against one of the central tenets of modern medicine.  In reality, it is not the neurologist or the institution where the neurologist works who are taking a risk when someone is treated with alemtuzumab, it is the patient who is taking the risk. Don’t they understand this? It is getting to the point in time when we are going to have to start naming and shaming these refusenik neurologists. Hopefully, when the national audit figures from blueteq, NHS England’s database of high-cost drugs, is published those centres who are not prescribing alemtuzumab or offering referral for HSCT will be exposed. I am of the opinion that if you are not using alemtuzumab or HSCT in a proportion of your patients with highly active MS then you and your centre are not managing MS the way it should be managed in 2021.

I am sure not all of my neurology colleagues will agree with me; do you?

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General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust.

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

83 comments

  • I am afraid the legal claim does not hold in this case. Malpractice is a very murky (and expensive) battle to fight. I don’t see how one can prove wrongdoing here,

    The cold truth is that MS treatments favour i) managed risk taking in the absence of rubber-stamped certainty ii) locality or access to the right people and iii) a lot of resolve and self drive on the patient side.

    Very much like life, on a similar Darwinian scale I would say.

  • Maybe she wouldn’t have lost time by taking Ocrelizumab straight away then start exploring the possibility with Alemtuzumab.

    • But she doesn’t want ocrelizumab; she wants to be treated with alemtuzumab. Doesn’t her choice of treatment count?

      • 100% Agreed her choice counts, I was really hoping to ask if it is worthwhile for someone on Ocrelizumab to explore the possibility/suitability of Alemtuzumab. I’m planning to ask my Neruo’s opinion if I should consider Clad/Alem if control long-term progression is my top priority.

  • Hello Prof. G,

    Are there any clinical studies results, any long term observations on brain atrophy rate of people who had HSCT and relapsed?

    There are multiple studies showing how the neurotoxicity increases BVL for ~2 years and then it gets back to the normal rates, however I was unable to find any information how the BVL appears to be in patients who had undergone HSCT and than relapsed (new/enlarging T2 lesions, new T1+ lesions, relapse etc.), is there any data on that?

    Is there any data that after a HSCT failure, the BVL remains at the healthy levels, or does it start to accelerate and gets back to the MS levels of pre HSCT?

    I am concerned on that as I was diagnosed with MS in 2014, had HSCT in 2015, and just had an MRI scan with one new T2 lesion (no relapse, no T1+ lesion). As the inflammation proccess can be stopped almost fully with the current DMTs (ecrelizumab), my only concern is the smouldering ms, the underlying progression of neurodegeneration.

    Also what treatment would you suggest for a person who just failed HSCT? I am eligible for anything, ocrevus, lemtrada, tysabri, mavenclad. My top DMT would be Ocrevus however all of it’s studies have shown that it doesn’t really affect the BVL rate, that is ~2,4% BVL during 5 year follow up for ocrevus, vs 2.6% BVL during 5 year follow up for interferons, not a big difference in my opinion.

    I am sorry for my english, it’s not my first language.

    Thank you in advance for your response! Love your work and blog 🙂
    Cheers,

    • There are people who show disease activity after hsct and their progression does not change

      There are people who dont have disease activity after hsct and their progression keeps rising

      https://pubmed.ncbi.nlm.nih.gov/29270686/

      Autologous hematopoietic stem cell transplantation
      in relapsing-remitting multiple sclerosis:
      comparison with secondary progressive multiple sclerosis

      https://pubmed.ncbi.nlm.nih.gov/28396953/

      In this study i recomend you look at table 3 tgere is suficient information for manny days thinking

      Good luck

      • Hello Luis,

        Thank you for replying. That second study is indeed quite interesting, especially the progression rate, however it is worth noticing that after 6 years post HSCT, only ~5 people were followed so the gathered data might not be that good in the terms of it’s quality.

        I really wish it would do the job and work with such a high success ratio, however only ~20% of patients were followed between 6/7-10 years post HSCT.

        Therefore that is why I asked specifically about brain atrophy rates after somebody fails HSCT (relapse, T1, T2). Do you have any data on that?

        Cheers!! 🙂

        • In the second study 10 people at least 6 years

          Dont know if i have that kind of study anyway Bvl and disabilty are somehow conected

          • Luis,

            Do you know if thre is any data on brain atrophy/BVL in people who relapsed/progressed with disability during Lemtrada treatment? I am I know that the mean BVL in Lemtrada group is 0.2-0.25% annually, however does this low rate remain in every person who took Lemtrada or only these people who responded to it better?

            I can’t find any data on that, I do not know if it is accessable for regular people.

          • Thank you MouseDoctor,

            Unfortunately I am unable to “reply” to your comment as the depth of replies limits me…

            I know that it is a trial outcome, though is there any separate data on BVL for the people who relapsed during/after lemtrada treatment and for those who didn’t? Does the BVL remain at the same level/rate for both of these groups or does it differ?

            Thank you in advance! 🙂

          • @MouseDoctor,

            I think I might be missing something, I can’t find that separate data for both of these “groups” this is – patients who relapsed and these who did not. Could you please point me a clinical trial results which show that data separately?

            As far as I am aware, there is only mean BVL for all of the CARE MS I, CARE MS II and Extension study participants,

            Cheers

          • Yes that is where the data is and if they want to address your question that is where the data is located they have the individual responses, we have been given access to this dataset unfortunaely we cannot address this question as it was not a question on which we were given access to the data

          • Thank you, now I understand. That’s pretty unfortunate that MSers can’t see the data which could impact their view on a certain drug.

            Cheers

    • “I am eligible for anything, ocrevus, lemtrada, tysabri, mavenclad. ”

      What country are you in..?..good to have access to all those…you are right to be wary of ocrevus…seems like heard people in your position going for mavenclad/cladribine.

      “BVL appears to be in patients who had undergone HSCT and than relapsed (new/enlarging T2 lesions, new T1+ lesions, relapse etc.), is there any data on that?”

      Think no data on this..maybe safe to assume that pre hsct ms yearly brain loss would
      be most likely.

      • I am from Poland, however it would be a private funding from my own pocket, I am “fortunate” enough to be able to cover all of the costs if necessary. In Poland I would not be able to get ocrevus/mavenclad/cladribine as I did not have a relapse post HSCT, just new lesions (even though my EDSS is not progressing with time),

        I am also considering cladribine IV, however in the studies that it involved it shows quite a weak results, ~0.24 annual relapse ratio, 0.7 new T2 lesion annually, compared to Ocrelizumab that is a large difference, however Ocrelizumab stops the inflammation and mavenclad is an IRT I suppose?

        Cheers

  • Alemtuzamab was pitched to me as a ‘last resort’ DMT which involved ‘a lot of patient monitoring’ and couldn’t be reversed. As another commentator observes, it takes ‘a lot of resolve and self drive on the patient side’ to cut through this sort of attitude from a medical team and how many people have that when they are feeling ill and pretty low anyway?

    • Hi Prof. I agree 100% with what you just said. I was that lady 15 years ago. I had to fight hard to get Alemtuzumab after 4 failed treatments and been told you have highly active MS there is not a lot we can do! This coming from a “Top” neurologist. Well I fought back and I got Alemtuzumab, I knew the risks and I was prepared to take them. I had 7 blissful MS free years then a relapse hit (nasty bugger of a relapse) this happened when the European Medicines Agency were restricting the use of Alemtuzumab so I had another battle to get round 3. Finally got it Dec 19 never looked back doing really well. My point is there are good Neurologists out there if you are not happy change. You must be your own advocate and fight for yourself. I’m based in Ireland and it’s no different than what you just described. We have a duty to ourselves to Stand up and fight for what we want.

  • 100% agree. It absolutely infuriates me that there’s a postcode lottery and that ms is responded to so differently to other illnesses in terms of being ‘cautious’ initially. I had Lemtrada as a first line drug because my neurologist was proactive and a firm believer in the hit it hard hit it early approach. The risks of treatment are mine to consent to and time is brain – my brain not the prescribers brain. It will be great when they can be named and shamed!

  • My neurologist told me (jokingly) if the patient chooses the treatment there is no need for neurologists.

    • Not sure how this is even vaguely funny. If my neuro said that to me I would make his statement come true and find a new neurologist who didn’t think this was an issue (joking or otherwise).

  • as someone diagnosed in a horrific way last year a month after being out of hospital with covid and ending up back in the same bed with a life changing spinal relapse i can fully appreciate how hard she has worked to get where she is. the confidence and self resolve it takes to be knocked back after setting your sights on a particular treatment can be devastating so good for her ! i was very unlucky with my first neurologist who wanted to stick me on injectables and forget about me even though my brain stem and cervical spine both had active lesions and i only partially reacted to high dose steroids! im now under a specialist at a great hospital receiving tysabri whilst we patiently wait for me to fail and be offered hsct. we are both in agreement that its my best option and that is because he is forward thinking. my first neuro should be named and shamed as i have connected with countless others that have become his victims and have had to self advocate to a different post code to someone who knows what they are doing. i hate to think how many people have sustained disability due to his lack of interest in ms.

  • I’ve had MS for c.18 years and was treated with Alemtuzumab c.16 and 15 years ago. I had very active MS with disabling relapses. I’ve had no relapses since my first round of Alemtuzumab infusions. The pre Alemtuzumab relapses left some permanent damage, but I can still walk the dog for 30 mins and cycle for an hour +. If friends or family every ask about my condition, I tell them “avoid getting a neurological disease at all costs”. Why do I say this:

    1. Neurological diseases are life changing. You never forget the day you were diagnosed and you live with a niggling fear for the future. If my MS started progressing quickly I know I couldn’t go on living so have a exit strategy.

    2. Neurologists aren’t like other doctors 1: they do not have a good understanding of the diseases they cover and for many diseases they have little to offer in terms of really effective therapies. There was a recent paper suggesting 20% of MS diagnoses are wrong! Neurologists can’t give an accurate MS prognosis (or half accurate prognosis) apart from bland statements about being female is good, high relapse rate is bad (Janet and John stuff). If a mechanic showed the same attributes (not great at accurately diagnosing a problem and not great at providing an accurate prognosis if the problem wasn’t fixed), I wouldn’t let them anywhere near my lovely car. Would you have confidence in a doctor who used a tuning fork, spongy hammer, stuck pins in the patient’s toes asking “can you feel it?” and asked the patient to stick matchsticks in holes? Do neuros know that we landed a man on the moon 50 years ago!

    3. Neurologists aren’t like other doctors 2: I found Alemtuzumab through my own research (I saw reports of patients doing very well). I wrote to an MS centre to get on a trial – it was my badgering which got me on the treatment. Do patients with cancer have to do a DIY job to identify a treatment and then send letters / emails begging to get on a trial?

    4. Neurologists aren’t like other doctors 3: the key thing a newly diagnosed MSer wants to to avoid is getting more disabled. It’s not rocket science – why can’t neurologists get this? The only way to maximise the chances of not becoming progressively disabled are (from the results to date) Alemtuzumab and HSCT. Why would a neurologist suggest a low efficacy treatment? Oncologists wouldn’t work this way.

    I find it sad that c.18 years after my diagnosis, MSers are still not routinely being offered the most effective treatments which give MSers the best chance of long term remission / limit further damage. Neurologists must see from their consultations with those with advanced MS what this disease does, so should be actively encouraging newly diagnosed MSers the most effective treatments.

    Before you head off into the sunset (MS prevention), I’d like to thank you for all your efforts. Sometimes you must feel like you are banging your head against a brick wall. Hopefully a new generation of neurologists (together with a Night of the Long Knives to rid the medical profession of bow tie wearing neurologists who wear ‘Copaxone is my therapy of choice’ underpants) will take on your baton and give newly diagnosed MSers a fighting chance of living a near normal life.

    • ‘Copaxone is my therapy of choice’ underpants
      Hahahahaaha!
      It’s a serious matter, but that is funny.

      • It is horses for courses; if you happen to be a GA or Copaxone super-responder be grateful. GA is one of the safest DMTs we have. Not everyone needs alemtuzumab or HSCT. The current dilemma is finding the responders to platform therapies without allowing too much damage to accumulate to the individual or the population. However, the issue here is the right for patients to choose their treatment and to have the right to disagree with their neurologist.

        • Prof G,

          Sounds like you’re wearing your ‘Copaxone is my therapy of choice’ underpants! Is your bow tie at the dry cleaners?

          What happened to flip the pyramid Prof G! Where’s my hero Prof G with the ‘nuke the disease early’ approach? It looks like the bastards have ground you down!

          • No, this patient may have been put on GA 10 years ago and is NEDA and doing very well. What I don’t know is what is happening to her smouldering MS and will she pay the price for 10 years of undertreated MS. This is why we need deep phenotyping and regular monitoring of MS. Relapses and focal MRI activity is not good enough.

          • What I am fighting for here is for patients’ rights to have the option of flipping the pyramid and to be able to choose which therapy they want. I am also not going to deny someone access to GA (Copaxone) if that is what they have chosen to start with. However, I will be with them, monitoring their disease, so as to offer them higher efficacy treatments if they had breakthrough activity on GA.

        • “Not everyone needs alemtuzumab or HSCT.”

          Have you read all the comments here ?…because a man wrote that he went 50 years before spms but at that point everything was like night and day difference.

          Do you honestly have any ms patients in their eighties/nineties doing well..? The reason you don’t is because they didn’t get hsct/alemtuz.

          Yes..this is exactly what Dr. Burt has said..but don’t think he understands that Ocrevus does not stop progression..

    • You are right that we live with a niggling fear for the future. Glad it’s not just me.
      I would feel happier if I knew I had an exit strategy if things got worse.

    • Seen that Alemtuzumab work very well in you case

      Does it you experience any side efects after those years?

      What are your symptom of ms nowdays?
      Thanks

  • Amen to that Professor Gavin. Every injustice you described I have dealt with. I have been thinking of going to court against my past neurologist. She denied me from getting ocrevus and because of that I now have vision problems and many more symptoms. My new neurologist prescribed me ocrevus no problem at all. I think its only a matter of time before I will bring my case forward into court with the help of a private neurologist that has legal experience under his belt.

  • “It is getting to the point in time when we are going to have to start naming and shaming these refusenik neurologists.”

    Oh yes, I’m really looking forward to that and also the enraged squealing from certain quarters (you know who you are). I also hope the bluteq information is not going to be redavted to protect those who continue to let down pwMS.

  • When will the blueteq data be publicly available and do you think there will be redaction after redaction making it all but useless?

    Thanks.

    PS: Could not agree with you on this any more strongly.

    • The data will be redacted; the aim of the audit is for it not to be a stick, but a carrot or a nudge for MS centres to improve their services. This is why we called the initiative raising the bar.

  • It really is quite a bizarre situation where patients are hoping for activity on their MRI scans (brain damage!) to move up the treatment ladder. In my own case, delays in my diagnosis meant that I suffered 3 relapses (2 of which involved lesions in the thoracic spine) before being offered ocrevus first line. I cant get to the next level until i have failed ocrevus but if if i was put on a CRAB drug earlier then my relapses would have qualified me for lemtrada. So i have sustained the damage put not reaped the rewards. This case struck a cord (no pun) with me as i also have thoracic lesions and have recently developed a fine hand tremor. I feel like i have gone downhill on ocrevus but the MRI tells a different story so i am effectively ‘trapped’ in terms of treatment options. This has led me to seek treatment for HSCT abroad and all the dangers that it brings. The system is clearly failing

  • Absolutely agree that patients should be offered alemtuzamub. I feel fortunate to have had it in 2018-19 before the recent review of the risks. It has wrecked my thyroid, but this is treatable, whereas another disabling relapse certainly isn’t. I have had no further relapses and all my issues stem from the massive relapse I had at diagnosis.

    • Not according to the patient. Our centre started dosing and redosing alemtuzumab in October last year. Based on real-life data ocrelizumab is a higher-risk treatment than alemtuzumab in relation to COVID-19.

    • I think COVID-19 has rolled back many innovations in MS services and treatment approaches that have emerged recently. For example, MS management seems to be more conservative, i.e. instead of flipping the pyramid, many patients are being started on less effective injectables and platform therapies. My heart sinks when I think about the rollback of a more active or aggressive approach to managing MS.

  • Just to note, there have been a series of great blog posts recently that are the reason this is one of the first internet searches i conduct every morning. ‘Curing MS’ is another example. Please keep them coming

  • Interesting. When I was diagnosed I was considered as having highly active MS, with three relapses in the past 9 months and five relapses in total (the first two were three years previously). However, I made a full and fast recovery from the first four (I’d say 90% recovered after a week, and 100% recovered after four weeks), and a slightly slower recovery from the last (but also a slower onset of symptoms).

    Although I wad eligible for Lemtrada my neuro strongly recommended Tecfidera and I was happy with that – I preferred pills to injections or infusions.

    I have wondered since whether that was the right decision and whether I should have chosen Lemtrada. But I’m doing well, so maybe my neuro’s intuition was right. If I’d chosen Lemtrada maybe I would have thyroid trouble by now!

    • How do you know that you are doing well? Have you checked out our brain volume loss and slowly expanding lesions? On average brain volume loss on Tecfidera is more than double that which occurs on Lemtrada. Most of what happens in MS is hidden until one day you realise you have progressive MS and it is too late to go back 10 or more years and make a different choice. Sad, but true.

          • Yeah that isn’t good 😦
            I guess no / limited data on people who started on CD20 first line at this point 10/20 years on? Alemtuzumab fares better?
            We should all be given the option to chose what we want to be treated with, including HSCT, our body/disease, should be our choice

  • Agree 100%. Makes my boil when I think about how we are treated (pun unintended) by these jokers. It would be fantastic to name them, they’re shameless though. It cannot happen but keep posting, they know who they are. I also agree with Sid 🤗

    • Facebook groups are full of names if you look. Personally not sure what I think about ‘public shaming’.
      I guess there should be lists of performance openly visible to the public. Sounds like this is what the raising the bar initiative is looking to do? Imagine if the NHS website had this info!
      Atul Gawande has an interesting chapter on cystic fibrosis treatment in the US where opening sharing performance between hospitals is discussed (book is kinda old now and the case study is the US) but interesting to someone who doesn’t know the inner workings of healthcare systems

      • No, I agree with your comment about ‘public shaming’; I am playing devil’s advocate. What we want is to get rid of post-code prescribing and promote equitable access to treatments, including licensed high-efficacy NICE/NHSE approved DMTs such as alemtuzumab. Why should someone have to delay their DMT switch for months because of local access issues?

        • Total postcode lottery. NI is not even included in the starMS trial, ‘not feasible’ for clinicians in NI, absolutely no equality in terms of access to healthcare

    • Interesting that you mention the gatekeepers of the north……would the survey reveal a north / south divide in the treatment of MS? definitely feels like we have been sentenced to the knights watch

      • There are people with the data to had in Sweden yet in the north they are more than 90percent rituximab

  • Oh Prof G… keep fighting. The name and shame sounds good too. The guidelines as well as the neuros are exhausting me right now…
    btw mini rant alert:
    went for a second opinion on Tuesday at a private hospital in London. Have had weak neck, pins and needles in my left leg and both hands for weeks now and am abnormally tired. Main aim was to get a 3T scan (will nhs Neuro even read it?) anyway this senior Neuro looks at me sitting cross legged & says “see that’s why you have pins and needles in your left leg, it’s not your MS! Your MS is benign! now tell your partner to tell you to uncross your legs when he spots you doing that” I left as baffled/furious by all of this as I have been since I was diagnosed in 2015.

      • ‘Your neurologist sounds like a character from a PG Wodehouse novel.’ 😂

        Heard Dr B Wooster was excellent at diagnosing using body language,

    • If my jaw had dropped any lower I’d be scooping up worms, not catching flies.
      That you had to experience this is beyond woeful, it’s actually abusive – definition: ‘extremely offensive and insulting’ As if living with MS ain’t bad enough🙄😡
      Do hope you’re able to find another 100% legit neuro who knows how to do their job properly!

    • Oh boy that’s shocking. I also had a really poor ‘private apt’ in a London hospital, the politics and gatekeeping access to drugs in the UK is just beyond belief, surely this can’t fly with other specialties?

  • And some, knowing all risks make an informed decision to go abroad, and for some that means passing away alone in a foreign country without family or friends around

  • Prof G please keep fighting for change.

    You know you are right and have the power and passion to change this culture that pervades through so many departments.

    Renal physicians strive to save every nephron.
    Rheumatologists fight for every scrap of joint tissue.
    Cardiologists race to reperfuse ischaemic myocytes.

    Ironically, as a last resort, you can even transplant a kidney or heart, replace a joint. No second chances for a brain and spinal cord.

    Watching your neurological function be spent in delay is devastating, and damages the relationship you have with the neurologists who are meant to be on your side.

  • Refuseneuro is better than refusenik; the latter is usually only used in the political sphere. Then I might be wrong, medicine is closer to politics than one realises.

    • Good suggestions. This one would be a neologism (new word), which is can be a sign of receptive dysphasia. Maybe I am losing the plot.

  • Public praising would be better than public shaming. A list of open-minded, forward-thinking neurologists / clinics so that PwMS can vote with their feet. Of course, it’s shitty that patients have to see a consultant privately or travel miles away in order to be prescribed the drug that they want, need and deserve rather than all neurologists being on the same page about early, effective, appropriate intervention. As long as patients are well-informed about the drugs on offer (and I personally don’t think that the MS Society / Trust websites etc go far enough here) then the decision should ultimately be down to them. I unfortunately discovered this blog too late and am now stuck with Copaxone which I chose as it had the fewest side effects. My neurologist at the time told me that I made the best choice. If only I had known then what I know now…

  • If one is going to advocate for the increased use of Alem, then we must also advocate for greater acceptance of an appropriate and safe de-risking protocol.

    Let’s not forget…….. https://multiple-sclerosis-research.org/2020/03/alemtuzumab-the-irony-of-humanisation-for-the-fashion-conscious/

    These drugs are not rubber mallets, they are sledgehammers and must be used with a full and complete understanding of the risks and “possible” rewards.

    I completely agree with Prof. G….use the DMT that works and is appropriate for that individual.

    At the end of the day, we (pwms) have to accept and deal with the consequences and risks of the decisions we make about the drugs going into our bodies. So we should be free to choose whatever DMT we want, but we should also be provided with the appropriate oversight, care, and access to advanced testing to ensure the highest safety and efficacy (at least for those DMT at the top of the pyramid).

    That is my only frustration with this blog….-sure I would like Alem, but find me a neuro that will de-risk with an anti-CD20 on top of Alem. Good luck! If they think Alem is too risky, they are for sure never going to add another DMT.

    • I am from the US. Diagnosed with aggressive MS. Several tumefactive lesions throughout my brain. Started on Tysabri as that was the strongest DMT available at the time. Moved onto 3 rounds of Lemtrada when that became available. Then started tecfidera as maintenance. Had horrible side effects to it, so switched to vumerity. Did okay on that. Now, once again progression. So I’m starting Ocrevis next week.

      There is a neurologist that will prescribe multiple DMTs after Lemtrada. I am very thankful for this!

  • It is a shame that Pabmouse Escodoc (aka Pablo Escobar, aka MD1) is still recovering from his recent neutering, as I am sure the old mouse would have a lot to say about public shaming and humanization. I want the old mouse back. Get off the fence and fight!

  • I have been exploring the idea of a private consultation with a neuro, mainly because I would get more than just a few minutes to discuss my situation and ask questions. However, reading some of the comments it seems it could be a waste of money. Do you have any advice on avoiding the so called refuseniks, how can we tell what their stance is beforehand?
    What do you think the refuseniks would say about your view Prof G?

  • When a refusenik says a treatment it’s too risky I wonder if their real issue is the time and cost of monitoring that goes along with it. Or perhaps their Trust refuses to fund sufficient monitoring?

  • Both scenarios are not ideal to be honest. We are not sure what causes MS and our understanding of the immune system is not perfect, so let’s wipe the immune system and hope for the best. HSCT/ale is far from ideal.

  • I’m in an alemtuzumab desert in the US. It’s just not prescribed in my area of the country very often, so patients who can afford it go to other states to be seen if they want it. I was able to get it after failing rituximab, but in a major MS clinic they had put fewer than 10 patients on it, per my doc, as of 2018. I can see why alemtuzumab is a heavy decision for patients and doctors to make, but I am appalled that patients here can beg and still never get it. If you don’t fail an anti-CD20, you’re SOL.

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