I saw several patients in clinic yesterday and had to speak to many on the phone about what to do about the next course of ocrelizumab and cladribine. It got me thinking.
According to the Italian society of neurology or SIN (Società Italiana di Neurologia) recommendations on the management of patients with MS during the COVID-19 epidemic we should stop dosing. However, the SIN guidelines don’t address the temporal sequence of the COVID-19 epidemic and how the epidemic may evolve. The SIN guidelines provide relatively straightforward, and I would argue arbitrary, advice on how to manage patients with MS in the short-term, but they don’t address how to manage these patients in the intermediate or long-term and in particular patients with highly active MS. If the public health measures flatten the peak of the epidemic, but extend its tail, the problem of community-acquired COVID-19 infection may be with us for many months and potentially years. Do we stop using these treatments for years?
Over the last few days, I have asked myself are the SIN guidelines compatible with the best interests of our patients or do they represent a knee jerk response to an undefined problem that may not be a problem at all?
I had a discussion about the COVID-19 epidemic with our renal transplant team who informed me that they are not taking any specific action about the levels of immunosuppression they are providing their transplant patients during the epidemic. Apart from informing their transplant patients to improve their hand and home hygiene, to avoid high-risk travel and unnecessary contacts, to self-isolate if necessary and to reduce contact with the hospital and other medical institutions as much as possible, because they are more likely to be sources of COVID-19. It is business as usual. Nor are they halting their transplant programme. Their argument is that transplanted kidneys and other transplanted organs are too precious not to protect them with relevant immunosuppressive drugs. Why would we not have the same attitude about the brains and spinal cords of our patients with active multiple sclerosis?
I would argue that solid-organ transplant patients are significantly more immunocompromised than pwMS on a DMT. Most transplant patients are on triple immunotherapy, compared to pwMS who are on monotherapy and even then the level of immunosuppression is generally low on MS DMTs. Hence, the mortality risk to an individual on a DMT, who is unfortunate to be infected with COVID-19, maybe actually quite low. Another hypothesis being considered is that moderate immunosuppression may prevent severe complications associated with COVID-19 infection. The severe pulmonary complications of COVID-19 infection appear to be consistent with ARDS (acute respiratory distress syndrome) caused by an over-exuberant immune response to the virus. As a result of this, several exploratory trials are currently being undertaken in China using immunosuppressants to try and dampen the immune response to the virus. Interestingly, fingolimod the S1P modulator, a licensed DMT for MS, is currently being tested as a treatment for COVID-19 associated ARDS.
Then there is the virology to take into account. COVID-19 is a new human pathogen, that is likely to have recently crossed species. COVID-19 will eventually become endemic and hence pose a seasonal risk to patients on immunosuppressive therapies. As it is a small RNA virus with low fidelity it is likely to mutate rapidly making a one-off vaccine only a partial solution. Vaccines take time to be developed, tested and introduced at a population level. Delaying treatment, de-escalating therapy by switching to immunomodulatory DMT, or interrupting dosing of DMTs to wait for a vaccine will delay the adequate treatment of MS. We, therefore, need a pragmatic response to how we manage the potential threat of COVID-19 in individuals with MS. If patients have active MS they need to be treated and managed based on the clinical evidence at hand and hence may need to be treated with higher efficacy DMTs. This will need to be done in the context of appropriate behavioural modifications to prevent exposure to the virus.
The potential risks posed by each DMT differ and, rather than imposing a blanket rule, decisions regarding treatment should be individualised. For some patients having their MS treated and controlled may be more important than the potential risk of being exposed to and acquiring a severe COVID-19 infection.
Based on the immunological principles that antiviral responses are mainly driven by T-cells, in particular CD8+ cytotoxic T-lymphocytes, and natural-killer cells and less so, at least initially, by B-cells. Based on these principles there is a hierarchy of immunosuppression of the DMTs. The highest risk will be the immune reconstitution therapies during the depletion phase of the treatment, i.e. HSCT, alemtuzumab (Lemtrada), mitoxantrone (Novantrone) and possibly cladribine (Mavenclad). However, post-immune reconstitution once the total lymphocyte counts have returned to normal the risk of severe viral infections are probably no higher than what would occur in the background population and would be associated with age and other comorbidities. Please note immune reconstitution takes months to years, so if the patient’s last course of treatment was in the last 12-24 months they may still be immunocompromised. As a rough guide if the total lymphocyte count is above 0.8 x 109/L or 800/mm3 they should be able to deal with viral infections reasonably well provided they have not other comorbidities and are relatively young.
Of the IRTs, cladribine (Mavenclad) should be classed as being of intermediate risk, because it is a relatively poor T-cell depleting agent. T-cells are only depleted post-cladribine by an average of 50% with the CD4+ population being more sensitive than the CD8+ population. In the Phase 3 CLARITY study, viral infections were uncommon post-cladribine and apart from herpes zoster, infections were only slightly more common in cladribine-treated subjects compared to placebo-treated subjects. When viral infections occurred post-cladribine they tended to be mild or moderate in severity. Therefore I think cladribine should be classified as relatively low-risk DMT.
Similarly, anti-CD20 therapies such as ocrelizumab have a minor impact on T-cell counts and are not associated with severe viral infections. In the Phase 3 relapsing-remitting and primary progressive trials infections were more slightly more frequent on ocrelizumab compared to comparator arms (interferon-beta-1a or placebo). Most of these infections were mild and moderate with the severe infections being bacterial in nature (pneumonia, urinary tract infections and cellulitis). Similar to cladribine there was a small risk of herpetic infections, which were mild to moderate and manageable with antiviral agents. I, therefore, feel that anti-CD20 therapies are relatively safe based on their profiles defined in phase 3 trials and we should continue to use them in patients that need them.
Another issue is neutralizing anti-drug antibodies. If you interrupt dosing of ocrelizumab, say after the first course, you may prevent high-zone tolerance from kicking in, i.e. the immunological mechanism that results in the immune system tolerizing itself to foreign proteins. This means that not continuing ocrelizumab therapy may increase the chance of a particular patient developing NABs and being a poor responder to the drug when it is recommenced.
Clearly any decision to start a DMT during the COVID-19 epidemic will need to be taken carefully and will depend on the state of the COVID-19 epidemic, not only in the particular country concerned, but in the specific area, the patient lives and is being treated in. For example, aggressive public health steps to contain the spread of the virus locally may make it relatively safe for a patient to start an immunosuppressive therapy. My concern is that the COVID-19 epidemic may trigger a large number of neurologists and patients to reconsider their treatment strategy and choice of initial DMT and to opt for less effective immunomodulatory DMTs. A change in treatment strategy driven by COVID-19 needs to be carefully considered. The COVID-19 epidemic in all likelihood will be short-lived and it would be unfair to patients treated during the epidemic to be disadvantaged in the long term regarding the management of their MS. We have spent an extraordinary amount of time and effort to activate the MS community; to get across the principle that ‘time is brain’, to treat MS proactively to a target of no evident disease activity (NEDA) and more recently to flip the pyramid and use higher efficacy treatments first line. These treatment principles are evidence-based and should not be thrown out in the context of a potential but yet undefined risk to our patients that in my opinion is being overemphasised; please remember we have no data on COVID-19 infection in patients with MS on DMTs.
Is there anything we learn from renal transplant physicians? Yes, with the possible exceptions of alemtuzumab, HSCT and mitoxantrone, which cause quite potent short-term immunosuppression, I think it should be business, or decision-making, as usual taking into account the caveats above with a major emphasis on reducing the risk of our patients acquiring the infection in the first place.
Groupthink and knee jerk responses are not necessarily in the best interests of our patients. So after discussing the evidence with many of my patients yesterday, we are cautiously going to continue ocrelizumab and cladribine dosing. In other words, personalised decision-making and a pragmatic approach are required. What is decided for one patient may not necessarily be right for another patient; do you agree with me?
Disclaimer: Please note this post, as with all of my blog posts, represents my personal opinions and not the views of my colleagues at Barts-MS.
71 thoughts on “#COVIDMS DMT use during the COVID-19 epidemic needs to be more pragmatic”
Nothing new regarding Tysabri?
Nothing new. In fact, we hope to get NHSE to relax the guidelines so we can start more people on natalizumab during the #COVID19 epidemic who have high disease activity. I think it is safe the chances of getting COVID-19 encephalitis will be very low.
One less thing to worry about.
On a tangent, non-MSer wife is pregnant – I can’t find any info relating to COVIDs and pregnancy. What is your gut feeling from what you have learned the far?
The foetus/baby and mother look relatively safe. No evidence of vertical transmission. It is so nice when you have data to refer to.
Chen et al. Clinical characteristics and intrauterine vertical transmission potential of COVID-19 infection in nine pregnant women: a retrospective review of medical records. Lancet. 2020 Mar 7;395(10226):809-815. doi: 10.1016/S0140-6736(20)30360-3. Epub 2020 Feb 12.
BACKGROUND: Previous studies on the pneumonia outbreak caused by the 2019 novel coronavirus disease (COVID-19) were based on information from the general population. Limited data are available for pregnant women with COVID-19 pneumonia. This study aimed to evaluate the clinical characteristics of COVID-19 in pregnancy and the intrauterine vertical transmission potential of COVID-19 infection.
METHODS: Clinical records, laboratory results, and chest CT scans were retrospectively reviewed for nine pregnant women with laboratory-confirmed COVID-19 pneumonia (ie, with maternal throat swab samples that were positive for severe acute respiratory syndrome coronavirus 2 [SARS-CoV-2]) who were admitted to Zhongnan Hospital of Wuhan University, Wuhan, China, from Jan 20 to Jan 31, 2020. Evidence of intrauterine vertical transmission was assessed by testing for the presence of SARS-CoV-2 in amniotic fluid, cord blood, and neonatal throat swab samples. Breastmilk samples were also collected and tested from patients after the first lactation.
FINDINGS: All nine patients had a caesarean section in their third trimester. Seven patients presented with a fever. Other symptoms, including cough (in four of nine patients), myalgia (in three), sore throat (in two), and malaise (in two), were also observed. Fetal distress was monitored in two cases. Five of nine patients had lymphopenia (<1·0 × 10⁹ cells per L). Three patients had increased aminotransferase concentrations. None of the patients developed severe COVID-19 pneumonia or died, as of Feb 4, 2020. Nine livebirths were recorded. No neonatal asphyxia was observed in newborn babies. All nine livebirths had a 1-min Apgar score of 8-9 and a 5-min Apgar score of 9-10. Amniotic fluid, cord blood, neonatal throat swab, and breastmilk samples from six patients were tested for SARS-CoV-2, and all samples tested negative for the virus.
INTERPRETATION: The clinical characteristics of COVID-19 pneumonia in pregnant women were similar to those reported for non-pregnant adult patients who developed COVID-19 pneumonia. Findings from this small group of cases suggest that there is currently no evidence for intrauterine infection caused by vertical transmission in women who develop COVID-19 pneumonia in late pregnancy.
FUNDING: Hubei Science and Technology Plan, Wuhan University Medical Development Plan.
There are more posts below today please read
Don’t worry, most are subscribed to email updates anyways and get a notification whenever something new is posted.
But aren’t neuros the one you should be talking to with regards to the MS Register? I know Cardiff feeds the register without even asking for patient consent to do so.
As do we
Very wise words. Thank you.
What about patients on anti-CD20 treatment who have hypogammaglobulinemia?
Most infections in hypogammaglobulinaemic patients are bacterial, particularly, encapsulated bacteria. Saying that COVID-19 may make hypogammaglobulinaemic more susceptible to secondary bacterial infections.
As this is a new virus so you won’t have immunity to it; i.e. there are no protective antibodies circulating in your own blood or in the population’s blood if you are immunoglobulin replacement therapy to protect you from becoming infected.
So on balance I would expect hypogammaglobulinaemic patients to do worse from secondary complications of COVID-19 infection.
Many thanks for this post Prof G, this is the most reassuring one I’ve read in the last week.
We are all trying to keep things in perspective & having a balanced view on this virus, but I was concerned about my immune system going into overdrive should I be unlucky enough to contract it.
I am 7 years post last alemtuzumab dose with excellent results, but suffered complete lost of platelets after last flu vaccine due to ITP. I still don’t know what triggered it, haematologist thought flu vaccine, neuro thought alemtuzumab still lingering in immune system caused ITP…. so I was left with feeling of having an immune system that really doesn’t know how to behave.
Many thanks to all the BartsMS team for sharing your knowledge, much appreciated.
Thank you for putting things into better perspective. Much appreciated. I am happy to go out now!
Reposted to shift.ms as well.
Please be careful regardless of having MS or not you don’t really want to get COVID-19 infection; even young people can get severe life-threatening infections. Dominic, I am assuming you are young 😉
At heart at the very least 🙂
Thank you, this is the conclusion that I had reached, not quite as eloquently I’ll admit, about starting year 2 of cladribine in 5 weeks. My neuro’ s advice was pretty much “improve their hand and home hygiene, to avoid high-risk travel and unnecessary contacts, to self-isolate if necessary and to reduce contact with the hospital and other medical institutions as much as possible”.
I am pretty convinced that most of us (With and without MS, with and without DMTs) will get the COVID19 virus in the next 6-12 months, most people will be fine, but every year we could also get influenza (even if we have been vaccinated) yet we all manage to survive. It is good to be reminded that there are many people who are much more immunosuppressed than people on MS or RA DMTs., and this isn’t being changed or stopped.
I live in Sweden an completed my second year of Mavenclad 28 november. . At the first checkup after my first Course last year my Lymphocyte count dropped to 0.4. Not great timing.
if you were at 0.4 before second course they would have delayed dosing, we had a grade 3 lymphopenia 0.2-0.5 after first dosing and stoped and the person when to grade 1 0.8-1.0 cells/10*9/L
No 0.4 was the lowest i went after the 2 doses the first year. Recovered to 1.2 before starting the second year.
What if one of your patients is adamant they want to start alemtuzumab despite your advice to the contrary?
What advise for trial patients on anti-CD20 therapies?
I’m due to start year 1 week 2 Mavenclad tomorrow and this is what I’ve been looking for. I will likely end up immunocompromised when the virus hits our area.
My question. Post-week 1 I feel better than I have since … well a long time. My walk is faster but most important my brain is clear.
DMTs aren’t supposed to make you feel better?!?
I do have chronic reactivating EBV and take antivirals which shouldn’t be that effective. Although they seem to allow me to have a more effective immune system for other things. So perhaps it’s that. Perhaps placebo but I don’t think so. Neuro says it’s chronic inflammation due to MS.
For years I’ve said I don’t really get sick – that my body just slowly tanks when I’m fighting something and it looks like progression. Then I, or a smart doctor, has an idea and the infection or virus is figured out.
I realize you can’t speak to specific situations, but as an ex-scientist I’m fascinated by figuring out all the puzzles. I would love to understand this.
Aren’t they supposed to make you feel better….fatigue can be a sickness behaviour caused by inflammation, get rid of that you feel better, get rid of inflammatoion natural repair mechanisms repair….feel better
Very interesting Karen, thanks
Thank you so much for posting this. I went ahead with my 1st full dose of Ocrelizumab last Thursday. I know patients this week at my hospital have been cancelled and I had worried I made the wrong choice. I work in a primary school and have been seeking advice on whether it is safe for me to work and just be very careful with hand washing. Is this something you are able to advise on? My neurologist is currently on leave and there currently seems no advice for those of us who have recently had these DMTs such as Ocrelizumab and work in the public sector.
I have just had a teleconference as part of an NHS COVID-19 panel and well will be producing a document called “Interim Guidance For Patients On Immunosuppressive Therapy” that will cover situations such as yours. The plan is to have it launched in the next week or so. I will cover it on the blog once it is official.
I don’t think there is a right or wrong choice; when we are in an evidence-free zone all we have are opinions with scientific principles to guide decision-making.
Thank you so much for your reply I will look forward to reading the official information as soon as it becomes available. Thank you for all of your extremely informative posts regarding MS they are hugely appreciated.
“…all we have are opinions with scientific principles” = way better than CNN and any other news outlet, which is reporting on the general public stockpiling TP and twinkies, (the last one having a shelf life of a bazillion years). Please don’t bother with the twinkies if you’ve never had one – think sugar and other really long-named ingredients repurposed into something yellow.
Thanks for your invaluable work. We are all grateful; you and your team are the smart people working on this for us.
I agree with this positions and I think that we could be more carefully with the recommendations in this not clear risks time. The truly risk in the most of patients is the disability. We could have action about laboral permissions to low risks in some special cases.
I put in a formal quey to Roche medical earlier this week about serious viral infections on ocrelizumab and this is the official response I got back yesterday:
“Thank you for your question regarding our observations of bacterial vs viral aetiology of serious infections in ocrelizumab-treated patients. We have gone back to our original clinical study reports capturing the controlled period of our pivotal trials as well as checked the latest data from our ongoing clinical trials and open-label extensions, and can provide the following answer:
A higher proportion of OCREVUS-treated patients experienced non-serious infections compared to patients taking REBIF (58.5% vs. 53.4%) or placebo (71.4% vs. 69.9%). These infections were predominantly mild to moderate, were equally likely to be bacterial or viral, resolved with standard treatments and did not lead to the discontinuation of OCREVUS.
OCREVUS was not associated with an increased risk of serious infections in MS patients, i.e. there was no signal for serious infections in OCREVUS-treated patients in MS. For the serious infections observed, the vast majority were bacterial (very few were viral infections, though some were never identified), they responded well to treatment and resolved, and did not last longer than the serious infections which occurred in the comparator groups.
Continued observation beyond the controlled data (through our open-label extension) has revealed no new or particular pattern of serious infections by year of treatment in RMS or PPMS patients treated with OCREVUS.”
Ocrelizumab-treated patients should find this reassuring.
This is very reassuring indeed.
Thank you for all the invaluable information here!
thank you for requesting this information.
I was told on Monday they wanted me in within a month to start Ocrevus because I kee having scans with new lesions on Copaxone
Yesterday they rang and told me it’s postponed. They did the blood tests Monday and they said I’d need a smear( so I rang GP and they won’t do it cos they said hospital will cancel it. so rang the cytology at the hospital and they told me they won’t do either because I am not due until July, and that I have to see my MS Consulant about it!!)
I know the NHS is free…but I am losing hope that anything will ever go right with my MS treatments!
I take ocrelizumab and I completely agree with this. Disability and brain loss scare me more than death. The brain is precious and to me doing everything possible to protect it is not optional.
Picking up on the advice to avoid high risk travel and hospitals mentioned by your renal transplant team – what about attending for the monthly screening post Alem: should this be halted for a month or two whilst the UK hits the predicted peak of the virus?
No. The current evidence suggest the virus is mainly being spread in the community and is not a hospital-acquired infection. This may change. The idea of not coming to the hospital is to avoid coming into contact with lots of people on public transport etc. The monthly blood and urine tests post-alemtuzumab are to keep you safe.
Lol! I wish I could be completely reassured because I fully understand that the tests are very important. However, I not only travel on public transport from Kent to London, but the area I’m required to wait for the blood samples to be taken, sometimes for up to an hour, is as busy and crowded as an airport lounge. Added to which this is the same area where the Costa is sited and the waiting area for those requiring transport – like Piccadilly station😆
However thanks for replying as your response means my husband is likely to work around driving me to and from the hospital.
I was sue my second Ocrevus infusion on 28 February but cancelled it. Today I had a blood test to check my B and T Celle levels. Overall lymphocytes are 1.4 but neuro said we should check the B cells precisely. She doesn’t want them too high or risk of relapse or too low risk of corona is what I understood. I’ve been provisionally booked for the infusion on 5 weeks time. Thanks for all the advice. If I lived alone I’d feel more secure going ahead however I have kids in school and two corona virus cases have been reported. Should I be more vigilant w it so close? Or just increase hand washing etc?
Sincere thanks Prof G for this rational and informative post. The amount of time you devote to MS research and education (including posting here) never ceases to amaze me. I hope your ‘time is brain’ reminder will allay many fears. I feel very reassured about anti CD20.
Was remembering this morning, I once had a lymphocyte profile done (chronic lymphopaenia 0.6 a year post dmf) and all came back normal except CD8. Lymphocytes have never recovered. Nothing I can do about it of course, so no point dwelling on it.
Is this a known issue with dmf? Please don’t post this comment until someone is able to answer, I don’t want to worry anyone unnecessarily.
Thank you Prof G and All the Team at Barts for sharing these helpful and reassuring updates. Extremely informative and very much appreciated
Published online The Lancet today.
For survivors, the median duration of viral shedding was 20·0 days (IQR 17·0–24·0). The shortest observed duration
of viral shedding among survivors was 8 days, whereas the longest was 37 days. Therefore the two week self-isolation may not be long enough….however here people were hospitalised and so maybe in a worse position and as you can see those needing ventillators died (97%).
However if testing capacity in UK is 1,500 at day (https://www.bbc.co.uk/news/health-51814874) the problem is we will not know. Korea has tested 200,000 people shows how quickly we have responded.
Maybe time to put the Genome centres around the country onto testing rather than genotyping
PwMS on immunosuppressive therapies may become supershedders, particularly natalizumab treated patients that may create a niche that allows for viral escape (mucosal sites / GIT).
I really appreciate the work you do in informing us about this. I feel like I’ve been going out of my mind recently and reading your Blog has given me perspective. Thank you
Lewis, I need to remind you that what I have written is my opinion, informed by data from phase 3 trials, real-life observations and scientific principles. This is not necessarily evidence-based. However, as evidence emerges we will update you.
I agree with not responding to the situation with a knee-jerk response, but as someone who currently resides in the U.S., particularly in a state that has the third highest amount of cases, I’m finding the situation difficult to navigate and beyond frustrating.
The majority of people I know aren’t taking this seriously and are treating this like nothing more than a bad cold. Considering our government has been encouraging this line of thinking, I can’t say I’m surprised.
I’ve been wrestling with the choice of coming off my DMT. I’m currently on Siponimod, which is quite similar to Gilenya. I’m reading that S1P modulators can have a beneficial effect on the virus by inhibiting a cytokine swarm, but the possibility of catching the virus with an already low lymphocyte level concerns me about how well I’d be able to fight the virus on my own without the need for supportive care in a hospital. Our local hospitals don’t have the capacity to handle the amount of patients that will likely need treatment for Covid-19 and are likely to get slammed with a swarm of cases due to lack of early preventative measures. We’ll also likely have a lot of community spreaders who don’t seek care because it’s unaffordable. These same people also will not self-isolate due to financial concerns and job insecurity.
In addition to having lower levels of lymphocytes in critical patients, doctors have found elevated levels of liver enzymes, which those of us on Siponimod are already at risk for.
I live in a high risk area with confirmed cases nearby. Schools are not closing and I have children. There is no rubbing alcohol, hand sanitizer, Lysol or other disinfectants available in our stores. Even if I isolated myself, my kids or my husband could easily bring a virus into our home that we can’t properly sanitize.
These are all concerns that stay with me day after day. I’m considering whether it may worth coming off the medication, at least temporarily until the rate of infection starts to recede or I catch the virus myself and have a better chance of mounting antibodies.
I am in your similar situation. I’m have you received a reply or guidance. I just had my first labs after being on 1mg Mayzent for 3 months. My AB lymphocytes are .38.
You Mayzant seems to be working
Hi, I’m 3 months post R3 Lemtrada. My lymphocytes are 0.5 I work in healthcare acute hospital setting and I am very nervous about this virus. I’m getting the normal response from my team (hand washing, reduce contact with public etc) Am I more vulnerable to this virus?
Yes your immne system three months on will be depleted, however your immune system is recovering day by day and there is no antibody around to stop this happening.
Dear Prof G,
I am a retired OB/GYN in Upstate New York, 16-yr history of MS, doing well with rituximab for six years. I do have somewhat low IgG, but clinically I feel that I’m stable, and except for zoster, which I control with daily Valacyclovir, I have not had many infections. I’m due for my next rituximab in June, and based on your excellent discussion of the issues, including the data on transplant patients, it sounds as if I should stay with my present treatment. Thank you so much for providing valuable advice in these difficult circumstances.
Thank you for this
One request — please put a big disclaimer at the start of the earlier Italian advice post and add a link to this post
Because, a search could take some people directly to the earlier post and they may decide to follow that advice
Thank you for the informative and reassuring article.
As MS provider in US I think it would be important to accurately code healthcare utilization ICD10 multiple sclerosis and Covid 19.
If there’s anything positive from this we may be able to learn more about MS, current therapies and emerging viruses with accurate coding. At least in the United States at this point, it appears to be somewhat difficult to code for Covid19 Including screening, positive results And sequela. (let alone the current issue of lack of adequate numbers of testing kits) . I suspect serum antibody testing likely will proceed vaccine for this specific virus (developing now in China). If antibody testing IgG and IGM is successful future results of antibody status may very well aid in directing therapies in future.
I guess bottom line is the more accurate our diagnostic coding is now the better will be our understanding of the disease of MS therapies and emerging novel viruses in the future.
Could you share more information on the Covid19 research in Fingoloid (Gilenya)? where is the research taking place?
I am on the drug and recently read in the UK MS trust something quite different which had me very worried.
It is simply listed as an actively recruiting trial in China.
Fingolimod in COVID-19. ClinicalTrials.gov Identifier: NCT04280588
On Gilenya, very worried, this helps, thanks
Thanks for such an informative post.
Slightly different situation for my partner at the moment, which is worrying me a lot. She’s supposed to be starting ocrelizumab min-April once the Gilenya is out of her system. Her MS has been diagnosed as active relapse-remitting, hence the change. We’ve got the added complication that she’s currently got a high dose of steroids in her system (and will do for about a month) to treat a relapse, which isn’t great timing with coronavirus! So she’s trying to isolate herself and I think it’s probably an idea for me to do the same.
I am pretty worried as well she won’t be allowed to start the ocrelizumab next month as the might just suspend therapies for the time being. Not sure what options we have!
And we’ve now just been told ocrelizumab treatment is being postponed because of coronavirus. Apparently they may want to go with Tysabri, which my partner will likely refuse to go with due to the monthly drip (she has a needle phobia). So, will may just have to sit it out and hope against hope she doesn’t relapse again.
Where do you put the risk for someone on Gilenya? I know they’re testing it for advanced Covid-19, but for an everyday user, what are your thoughts?
Thanks for this article- its very interesting. Which of the risk categories would you put fingolimod in? It’s interesting to see its being trialled for ARDS but I’m not sure where that puts it in terms of risk of getting / fighting COVID-19.
Great insight and thoughtful. For sure MS and MS therapies are not one size fits all. Important to capture big data ie ms ICD 10 codes and all codes assigned to covid19. We should be able to then link with therapy. How are you coding all of this in the UK? and do you think it is being coded accurately?
Kits to do viral testing not enough…some commercial industry and academics stepping up
I’m at the University of Nebraska, your updates are important
I believe 500K testing kits are on the way to you from China courtesy of the Jack Ma Foundation.
I had my first alemtuzumab treatment on the 17th Feb 2020. Should I be self-isolating, am due to have my first post infusion bloods next week so unsure of my lymphocyte count.
You should have recieved guidance from your HCP as your immune system will be very low and you are at risk from infection
Dear Prof. Giovannoni
I was diagnosed with MS back in 2010 or 2011. I had extremely mild symptoms (left leg was mildly numb for a few days) and the MRIs showed very few lesions. Spinal tap showed oligoclonal banding.
For years I did not receive any treatment as my doctors adopted a wait and see approach to see whether it was just an isolated symptom. I received MRI follow-ups every 6-12 months with no disease progression. Around 3 years ago however there were 1-2 new lesions and I started Aubagio. However I developed leg pain – doctors thought it might be side effects – I stopped after around 2 months.
Very recently – in November or December 2019 – 2 new lesions in my brain and a fairly big lesion in my spine were discovered. I then started Mavenclad in February 2020 (20-24 February, with the dose for 80-90kg).
I am now due to take the second dose for this year 20-24 March, i.e. in just a few days. I have read on many websites that Mavenclad could actually be one of the more dangerous DMTs to be taking during the COVID-19 pandemic, and people should delay their second YEAR of taking the drug. However for me I am only about to start the second MONTH of treatment, and I cannot find any information on this specific scenario – should I take the drugs or not?
In your post, you state the following:
“Of the IRTs, cladribine (Mavenclad) should be classed as being of intermediate risk, because it is a relatively poor T-cell depleting agent. T-cells are only depleted post-cladribine by an average of 50% with the CD4+ population being more sensitive than the CD8+ population. In the Phase 3 CLARITY study, viral infections were uncommon post-cladribine and apart from herpes zoster, infections were only slightly more common in cladribine-treated subjects compared to placebo-treated subjects. When viral infections occurred post-cladribine they tended to be mild or moderate in severity. Therefore I think cladribine should be classified as relatively low-risk DMT.”
My neurologist has for now recommended that I should delay until end of March. He also says that we essentially do not know if the drug will still be efficacious if I delay the second month of treatment.
I am at a complete loss right now as to whether or not I should take this second month of Mavenclad.
Thank you so much for what you are doing for the MS community.
With warm regards,
Hi professor this is just a problem I am Hoping you may be able to help me with. I am female 60 yrs old I am due to have my fourth infusion of Orevus in one Month I am also Asthmatic so I am very concerned I was diagnosed 11 yrs ago and this is the only treatment I have been offered so I am really nervous about stopping because of Coronavirus do you have any suggestions Many thanks Beverley
Happy birthday from Australia
Thank you for your leadership and guidance.
Tysabri has been my 3rd DMT in 3 years ! The first treatment that has slowed MS down but also made me feel like me again and hugely helped my cognitive issues and numbness! I started tysabri in September 2019 and in June 2020 my neurologist said due to COVID-19 she is putting me to every 6 week infusions and everyone was the same ! I have had a huge issue with cognitive issues again, numbness, dizziness ! I spoke to my neuro and she is un willing to put me back to evry 4 weeks ! She said maybe when COVID-19 stabliles ! Im really not happy as things were brilliant on 4 weeks infusions