Novartis what is happening with the imods and COVID-19?


The rule number one of fight club is dont talk about fight club!…..Rule number one of pharma club is don’t SH1 on your own product!…..OK to paraphrase….Do not highlight any issues, but there is one Big Issue I want to know about and it has nothing to do with being homeless.

Sales for anti-CD20 have been doing fantastically well and it was all rosey and everyone loved it, but now there is competition and importantly, now there is COVID-19. So with success comes information. This means if something is not quite right, then there are enough cases for it to come to light.

Therefore, of all the MS-DMT (drugs), there is one class of agents where some mud has stuck.

This has been the anti-CD20 antibodies…there has been case report after case report of COVID-19 worsening and as for vaccination there is an endless sea for reports showing that CD20-depletion inhibits vaccine-related antibody responses.

You can make it look not that bad by assaying anti-whole Spike antibodies, which runs around a 40-60% seroconversion or you can assay the receptor binding domain of Spike (s a marker of what blocks infection) with 20-40% seroconversion. You can wonder does this stop the COVID-19 vaccine from working properly and still create a problem if you catch COVID-19?

The UK government has done their upmost to help ensure that the delta variant spreads as much as possible. So we have all enjoyed our hols (AKA COVID spreading events) in Devon and Cornwall, North Wales, Blackpool, Lake district , The High Lands and West Coast of Scotland and the Pembrookshire coast. Maybe Glasgow brought it back from the Euros in London and took it on their hols to the West Coast and Ireland or maybe the Northern Irish have been enjoying the Craic. They have us all carefree with the “let’s get back to normal” attitude as the hospitals slowly fill up with the anti-VAXers and the youth. However, there are a fair number of double Jabbees, showing us that the vaccine efficacy wanes with time and therefore you don’t want to start with a disadvantage.

It says also be careful especially, if you have COVID-19 risk factors

Anti-CD20 gives you that disadvantage and blocks the anti-Vaccine response and even if you do make a response it is lower than if you did not have it. To their credit the manufacturers of the main anti-CD20 have been transparent about what they are going, so the mud throwing rests there, but there is one issue where information has been scant and the manufacturers have been notably quiet…so

Come on Novartis (Fingolimod, Siponimod), Celgene (Ozanimod) and Janssen (Ponesimod)! What is happening with your imods and COVID-19 vaccinations. We want to know!..Is this rule one of Pharma Club?

The agent that has most effectively inhibited the COVID vaccine antibody response is Fingolimod….yet it hardly gets a mention. What is happening? Is this a problem of RNA vaccines or do all vaccines not work very well?

There has been enough time for vaccine studies to occur. Is it that no one takes the imods, so there is not data?

However, the imods are only used in MS and so the faster info on anti=-CD20 occurrs because it is widely used in many different conditions. What happens to the T cell response?/ Come on Companies you must know….it’s a safety thing!

Come on! Do a guest post….the truth will be out sooner or later. Get it out now, so we know what to do with boosters etc. The US has recognised that mycophenylate is a problem and are doing a study on it but as the S1P1 modulators (imods) are MS they have been ignored.

To the science community we know anti-CD20 is the problem kid we have loads of papers, the novelty is in the imods, give us a paper with more than 10-20 cases!

Disclaimer: Please note that the opinions expressed here are those of the author and do not reflect the positions of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust or Queen Mary Univeristy of London.

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  • I’m on Fingolimod and should be getting booster in the coming weeks…I’d love to know too what’s going on with Fingolimod and mRNA vaccine and if there is any point getting booster

    • There is litttle information out there but fingolimod could be enhance response or it could do less. This is why pilot trials should have been done.

  • At last – someone is asking for more detail about fingolimod and vaccine response and risks of Covid. Thank you !!
    I am a pwMs on fingolimod since 2014. I and I’m sure all other ‘imod-ers’ am desperately waiting for some specific information following the news that my two Covid vaccinations are quite possibly worthless.
    After over a year of strict shielding due my husband being clinically severely vulnerable (due to oculopharyngeal muscular dystrophy) we had our vaccines and were thinking woohoo, we can get some life back. But not so fast. That lovely dmt that has kept the relapses away has turned traitor. Ah ok, I’ll come off it and allow the vaccines to work. Not so fast – do that and you’re likely to have the worst relapse ever ! Right I desperately need some info on which to base some decisions. Ha – you’ll be lucky, scarcely a mention of fingolimod to be found anywhere.
    It feels like we ‘imod-ers’ are of no concern or interest to anyone whatsoever. If that’s because despite lack of vaccine response we can still put up a good fight to Covid – hurrah. But who knows ?Anyone ?? Thank you again MouseDoctor for asking our question

    • Yes remember there was no signal of people doing badly after COVID-19 infection. One wonders whether the natural infection is process different from the vaccine and there are more things in an infection to stimulate immune response compared to vaccine.

      I have a paper that is half written on the imods maybe I should bite the bullet and put it out there and get my head chopped off if I get it wrong or wait to get a Whiff of what is going on and then try to explain it.

    • Thank you Catherine!! You just described my -and maybe all fingolimod users’- everyday life since March 2020! No info about fingolimod, few papers, fewer trials. All MS community talks only about anti-CD20 & Covid19, maybe it’s a trend or something. Only this blog has hosted some info and opinions about taking fingolimod during the pandemic (thank you for that doc) but it’s not enough.

        • This is up to you doc! I wish it was that easy but it’s all about your professionalism and reputation. You know, these days with all the social media and stuff and considering how easy people criticize and judge, this could hurt your public profile. Or not. Either way, my respect to your blog will remain high.

          • Me professional…… I think some people will argue about that:-).

            OK maybe I will do it but it will take abit of time to get it ship shape…Maybe I will put it on the blog first. However be warned either fingolimod gets it in the neck or fingolimod, siponimod, oxanizod and ponesimod all get it in the neck. We have heard alot about anti-CD20 but at least we know people make a T cell response, not much has surfaced about fingolimod and it could affect T cell responses so thinking about it the naive T cells will not be in the blood as they will be trapped. However the good news is that fingolimod is not associated with worse out come. That needs thought to explain. Any ideas?

        • Hi Again
          I say yes please – do let us see the info/thoughts you’ve got so far. But that’s just my opinion and its not my head on the block !
          Also, just want to reiterate thanks for the ongoing work of you and the team for this blog. I’ve only recently found it and its such a relief to have accessible up to date information about ms.

  • Thank you for raising this.
    I’m on Fingolimod, took a private antibody test, I have 115, was advised healthy folk have 80,000.
    Fed up of reading about the anti CD20 DMTs but as you say nothing about the imods.
    Given me the push to tweet Novartis though I’m sure there won’t be a response!

    • Well said Linda, I’m on Fingolimod too. Got the Phizer jab but without any (antibodies) luck. Waiting impatiently for the booster, but who knows? I can’t think why an extra shot will do THE difference I’m looking for to start living again like a normal person. In my 37 years I used to be a good father and husband, a hard worker, a good friend, a happy traveler and a social person. Almost 2 years now I live like a shipwrecked person, trapped into a jail.

      • Join the club
        The extra shot does the difference for some but I am not sure about this one why would it let breakthrough immunity and still control MS.

    • I have recently been advised to change to fingolimod following relapse. Have 3 main concerns – blunt of vaccine though have had first 2 jabs, immunosuppression working with pubic & finally coming off it.
      Can’t make mind up, thinking of going with tecfidera instead.

      • I was on fingolimod but was given the option of switching to cladribine. The vaccine issue was foremost in my mind. My second round isn’t till next year but the prospect of emerging next autumn with the ability to have any vaccine is wonderful. The two years it takes to do the treatment would have sounded very long pre-covid, but seems nothing now…..

      • Hey Sandra,

        I am not a doctor but I was on Tecfidera before Gilenya and I wish this drug would have worked for me. IMO it was a “light” drug, comparing with Gilenya side-effects. My immune system and lymphocytes were OK but unfortunately I had high SGOT, SGPT scores in my liver function tests. Now I feel trapped in Gilenya for almost 2+ years, having already a basal-cell carcinoma and some other strange feelings/pains including the pandemic anxiety. If Tecfidera would suit me, I would go for it after asking my doc!

        • Im not a doctor either but remember fingo is probably more active than DMF so you have to ask why fingo was selected in the first place

          • Am not certain, but think it was down to algorithm.
            I know fingolimod has good results preventing relapses, but just can’t get my head around the rebound activity. It feels like playing Russian roulette.

        • Many thanks for honest reply. Do appreciate it. Can completely understand you feeling trapped in it. My neurologist did say I could try tecfidera if I wanted to. Trapped between rock & a hard place.

  • I think all ppl on Fingolimod have been wondering this. As a pwMS on Gilenya, I am currently fighting Covid… day 12 still had a fever, cough, and several other symptoms including flaring MS symptoms (eyesight). Started antibiotics yesterday and steroids today. Wish my doctors had more info to go on.

    • Fighting wishes
      The eyesight is a fever issue I think paracetomol ibruprofen may help get the temp down (uthofffs phenomenon.

      • Yes! Thank you. Spot on with the fever. Still fighting it, but my eyesight is better now that the fever is mostly gone. I’ll take any improvement if it means I’m finally getting over this.

  • I live down the road from Novartis in Basel and no one at all is talking about fingolimod. It is the dirty smell in the room no one wants to acknowledge. I had to insist on blood tests that showed I had made no response at all to two Pfizer jabs.
    I don’t yet know if jab 3 has done any better.

    I am about to change to Ocrevus. Is this any better in covid vaccination terms does any one know? ? Any response welcome!

  • MD, I think this is my favorite post on this blog of all time!

    Also, it is a sad time for global health that we have to sit around waiting for someone to maybe/hopefully fund research like this. I wish NICE would bully the pharmacos into doing it…for sure no one in the US will unless we get a celebrity to start tweeting and they go viral. (I wonder what DMT they gave Christina Applegate…)

  • Yep, another frustrated fingolimod user here. I regularly Google “fingolimod COVID vaccine” and I get hit after hit talking about anti-CD20 drug. It’s maddening.

    I don’t want to switch off fingolimod — besides the possibility of rebound relapses, I’ve been doing extremely well on fingolimod, no new MS activity and no side effects except the low lymphocyte count which more an “effect” than a side effect. So even if I don’t have any rebound I feel like there’s basically nowhere to go but down in terms of how well a DMT works for me.

    Something I’ve wondered but don’t know enough about either fingolimod or the immune system more generally to know if it even makes sense — would it be possible that a larger vaccine dose might work better for fingolimod patients? That maybe it would be treated more like an actually infection?

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