EyeMOD Vaccine Responses. Give Me Some News!

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Last week we put out a call to see what is happening with fingolimod, siponimod, ozanimod and ponesimod vaccine wise. Sad to say my phone has not been ringing and so far…..Radio Silence.

Is it rule number one from Pharma club? or just the studies are ongoing

With regard fingolimod we (royal we) have done our own studies. Fingolimod has surprisingly made a mediocre vaccine antibody response with BNT162b2 and AZD1222, which is surprising as there is no signal from being naturally infected. But fingo targets T cells too

However, it has not really appeared on the radar as the imods as they are not used in cancer and arthritis and so they have recieved no attention from the Joint Committee of Vaccines and Immunization.

However, fingo should perhaps be top of the MS list for third/booster dose. Researchers have been too busy going after anti-CD20 to take a look at the imods. There are hundreds of case reports on the influence of anti-CD20. However the imods would be the best candidates to be investigated because they can affect T and B cells. Surely there are enough people in trials for all of the manufcturers to know what is happening by now.

The big question for me is “What is happening to MSers taking Siponimod”…There will be more people out there taking this. What is your experience with being vaccinated? Did it work for you? What happened to your T and B cell responses? Will it be same a fingolimod or different? What vaccine did you get?

There were quite a few readers who “gave us a head-up” about their experience of boosters and anti-CD20

Siponimod has been on the market in the US the longest, what’s happening on the other side of the Pond?

Can you remember the 80s, big hair and shoulders. Maybe you weren’t born then, Maybe you had hair then:-)

NEWSFLASH

The spies have informed me that there is an ECTRIMS report planned…I guess they haven’t heard of Twitter:-)

Assessing the immune response to SARS-CoV-2 mRNA vaccines in patients with secondary progressive multiple sclerosis treated with siponimod (AMA-VACC clinical trial): Tjalf Ziemssen, Tobias Bopp , Benedict Rauser, Benjamin Ettle, Marie Groth,

This Poster number 810

FYI This is trial NCT04792567 started in April 2021 finished by Jan 2022 looking at 60 siponimod with Moderna based on info in http://www.clinical trials.gov

There are also studies with ofatumumab

KYRIOS (COMB157GDE01; NCT04869358), and EMPISTOS

(COMB157GUS16; NCT04878211)

Rush, Hemispheres | Rush band, Rush albums, Album cover art

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.

About the author

MouseDoctor

26 comments

  • I am a 55 year old male with rrMS…diagnosed in 1999.
    Asthmatic and overweight – with hay fever, other allergies and an under active thyroid.

    I am double jabbed with the Pfizer vaccine – the first one caused swollen lips and blisters/swellings in the mouth, which disappeared after a day. The second one had no side effects.

    Until Covid I did not know anything about the negative effects of Fingolimod on vaccinations or the likelihood of rebound disease if I stop taking it (this was never mentioned by the hospital when I was moved onto Fingolimod from Avonex and I have still not been told).

    When travelling abroad in the past I have had the recommended travel vaccinations – and every year I get the flu jab (I have an appointment for this years jab on Monday). So if the Covid vaccines are blunted or cancelled out by Fingolimod, is the same then true for the flu jabs and travel vaccinations?

    If a booster jab is offered, does it matter which of the vaccines the booster jab is?
    Is stopping Fingolimod worth the risk of rebound MS?
    Would taking a smaller or less frequent dose of Fingolimod make any difference to the vaccine response?
    Should I stop Fingolimod and go onto another MS dmt that did not blunt the vaccines?

    I was in the clinically extremely vulnerable group and had been shielding for all that time. I have recently started to begin getting back to some sort of normal, meeting family and friends, going out to restaurants etc….but with the winter coming and the rise in Covid cases….and the Fingolimod issues, is shielding really going to be the future?

    Any advice or information would help me to make an informed decision.

    Thanks

    • I took fingolimod for five years with no issues apart from some warts appearing. However, when I asked the neuro if I would be on it for life (I am now 71), he offered me three choices a) stay on fingo b) go back to copaxone c) cladribine. As I understand it, the risk of infections on immunosuppressants like fingo increases with the years and I was definitely getting more warts but the gamechanger was the vaccine situation. As long as I was in fingo I’d be to all intents and purposes unvaccinated – not such a big deal with the flu vaccine, but covid is something else. I decided to go with cladribine, although I was very anxious about rebound when I stopped fingo. I was reassured that my risk was less because I was older and have stable disease. In any case, the washout period is monitored and precise to minimise risk. The change of drug is not a quick fix, though. I’ve just finished year one treatment and year two will be July and August 2022. (It’s one week of a daily tablet in one month followed by the same a month later, so basically four weeks of tablets over two years). My new immune system won’t be complete until summer 2022 and until then I’m immunocompromised, so effectively no different from being on fingo as regards vaccine. I’m confident it’s worth it, though – the way things are looking, the on-off lockdown/restrictions will be with us into next year so I won’t be the only person with limitations on travel etc. After that time, I’ll be able to have any vaccine. It does feel liberating not to be taking a daily tablet and I gather that once treatment is complete there’s no further tests etc. I’m very grateful to have been given the option.

      • Thanks for your response.If you look at the Israel data they waited 4.5 months to vaccinate. Not people on clad give vaccine response, but most do. At 6 months about 5% of people on ocrelizumab have 1% B cells for cladribine based on my data from clarity study it is 100% indeed it ranged from 90%-100% 0-6months, at around 9 weeks the numbers are lower so I think abit of a wait to optimize is better. Still working on the results. For 3% B cells 36%-91% over 0-6 months for ocrelizumab (phase II) it was 3%.

        • Sorry – don’t quite understand. Are you saying that I might make a vaccine response before I finish year 2 clad treatment? I’m getting a booster covid shot soon I hope but am presuming that no vaccine will give me sufficient protection until next autumn. If I’m wrong on this, I might bring forward some travel plans!

          • Obviously you should look at your lymphocytes to see that they are present after the finishing the fingolimod and the depletion by cladribine after the last dose of cladribine it will be out of your system in less than a week you then have 10 months of wait before next cycle. You should be able to make a vaccine response once your cells come back, the next year cycle may kill a few memoy cells but I would predict that the antibody response made remains. Therefore even if you start 4 months after last dose of cladribine there is still time to have dose and second and even third dose before next cycle. Remember people get vaccinated a month before cladribine to stop varicella…this would be point less is cladribine got rid of the response. You can have your next cycle and then you a boost etc. Obviously your Health care team will be monitoring this.

            Based on what I have seen if you have not response from fingolimod this could be like starting from fresh (You needed to the two doses of pfizer to get good response e.g. I was still at background after one) so a booster may not give as long a response (as two effective doses). Moderna gives the highest response. However you simply have to check your antibody response, if you are in Barts Catchment area email bartsMScovidAb@qmul.ac.uk for a blod spot. Also people in Cardiff and Nottingham have been doing this

  • I’m 46 with RRMS and take 1mg Siponimod for almost 2 years. Both my neurologist and infectious disease specialist wanted me to stop the medicine for 1 week before and 1 week after each injection. I was nervous, but my MS is mild, and I knew the vaccines were not working on S1P meds. Just prior to stopping for the first injection, my lymph were .6.

    I had Moderna. I did well with the first injection, but was sick for a few days with the second. I’m fact I felt bad for over a week with the second, longer than anyone else I knew, even my mom who also has MS. Possible a combination of being off Siponimod and the vaccine.

    Labs showed that I developed antibodies 6 weeks following the second vaccine!!!

    I’ve now had the booster dose amd was sick again. Not as bad as injection #2, but still in bed for several days.

    I had annual MRIs last week, they are the same as last year. I consider myself to be very fortunate. However, I continue to take all precautions. I work from home, don’t go to restaurants, grocery pickup, etc.

  • 40, recently switched from DMF to Siponimod. Had Covid this year. No problems occurred, except from some light sneezing. Was vaccinated twice with Moderna. Finally made the switch 2 weeks (became 4 week due to vacation) after the last vaccination. No bloodwork available to share at the moment.

    Will the COVID antibody’s from the period before being on Siponimod last and give any protection for now? For how long? Or will Siponimod actively ‘remove’ the antibodies?

  • 59 year old taking Fingolimod for 8 years. Zero response to two Pfizer jabs. Had third jab in France. Swiss doctor ( I live right on the border ) is keen to swap me to Ocrevus but as both seem to blunt or destroy vaccines response and Ocrevus means worse out comes if I catch covid , I feel stuck between the rock and the hard place. It feels like I will never go out again!
    I trap and identify moths for distraction.

  • I started fingolimod 7 months before my vaccination. My lymphocytes have always been within normal range.
    Can I be optimistic that I’ve made a vaccine response?
    If I haven’t made an antbody response, what can I do to test if I have made a T-cell response?

    • Based on data I have seen the antibody response after Pfizer and Az vaccines is poor seroconversion. So I can’t be confident.

      Likewise in contrast to what happens with ocrelizumab it seems that there is not a good T cell response based on data I have seen however there is nothing published. Hence my call for information

  • I’m sorry to keep pestering with the same question, but are we confident that all those PwMS treated with other DMTs such as Alem and who remain immunosuppressed haven’t all had a blunted response to the vaccines?

    It’s only that the JCVI have put the immunosuppressed at the top of the list of those to be offered a booster dose and so I’m thinking surely this means the likelihood is that none of us on or having received a DMT have provided a sufficient vaccine response ???

    • On the slide in todays post look at the violin plot (Slide 19) it gives idea of antibody levels with each DMT. As you can see alemtuzumab is well proprotioned nice thighs , not fat calfs or club feet:-). On Alem I think you will get good antibody response based on B cell repopulation. Maybe T cell response reduced but I havent seen this yet.

      The JCVI have put the immunosuppressed at the top of the list of those to be offered a booster dose as immunosuppressed people have blunted response and respond to boosters (The immunosuppressed people are mainly cancer and HIV). They do not have the level of inhibition of anti-CD2O but JCVI have based their views on rituximab,
      I suspect they do not understand MS and its treatment.

      • Can you please explain why if the first two vaccinations were blunted how another booster is worth having because won’t that be blunted again?

        • Yes it will…There is evidence with anti-TNF that the third booster seems to make more people convert, so far I have not seen this with anti CD20

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