I was diagnosed last year and started on an anti-CD20 therapy, and was not offered vaccines beforehand. It did cross my mind but by that point I was so tired of self-advocating, I didn't have the capacity to push for yet another thing.
I specifically asked my neurologist for the shingrex vaccine before I start cladribine. She said it wasn't routine and she doesn't offer it!! I wasn't warned that the Covid vaccine was ineffective while on Ocrevus.
Why are we being ignored????? Do I refuse cladribine until after shingrex?
COVID-19 vaccine is not completely ineffective on anti-CD20 therapy. You can still make a T-cell response to the vaccine, but not a good antibody or B-cell response.
Shingrex is only available from September. You can have cladribine and have Shingrex when it becomes available in the UK. Vaccine responses seem to be maintained on cladribine regardless of where you are in the treatment cycle. However, live vaccines should only be given once counts are back to normal (lymphocyte counts > 1000/mm3) or near normal levels (lymphocyte counts >800/mm3).
i already had lots of covid vax and got pneumovax before starting Kesimpta. I specifically asked for shingles vaccine - but this was refused. how come im smarter than the ms nurses/system? though that certainly wont be the first time!
A lot of pwMS know more about the subtleties of managing MS than their HCPs. You have more time to read, etc. Instead of being confrontational just send them the link for the Government''s change in policy. At the end of the day the management of MS needs to be a partnership between pwMS and their HCPs, which is what MS-Selfie is about.
"Empowering people with MS to self-manage their disease and to ask the right questions!"
i have been trying to get something out there to the public where we need more non live vaccines, especially for those that need boosters like MMR etc
i have had a huge up tick in vaccines since being on Tysabri just to be safe
ive had : Hep A, B, Tetanus, Typhoid, JESPECT, Polio booster, Covid Jabs, Meningitis, Pnemoccocl (spellling) shingrix
unfortunatley i didnt develop antibodies to Mumps so my MMR failed for that one, and as im now on Tysabri i cant get this
need more non live vaccines, MRNA etc
im also quite nervous of general mosquito borne viruses as we have had our first japanese encephalitis cases in australia now so i got jespect last year (even tho im at low risk, im not taking chances)
I’m on natalizumab for 10 years and previous vaccines were not mentioned, nor was I screened for immunity. However prior to my diagnosis - just a year before in fact - I had a HepB vaccination because of being in a high risk profession.
Does natalizumab prevent us from getting a Shingrex vaccine, and with the changes to the guidelines will we qualify for it even if our natulizumab treatment has already commenced? I don’t mind paying for it, I just desperately want to avoid getting it (I’m early 40s and have seen multiple (healthy) friends get bad cases of it at my age)
No! I got shingrex and am on Tysabri (37 years old) I’m in Australia and my dr just said here you go (it was a private script so I paid as it’s not free for under 50 here)
I had some dialogue with Dr freedman who mentioned live vaccines are not constrained with Tysabri but I believed they were?
I just did another panel of serology and it confirms measles and rubella immunity but only equivocal immunity to mumps
If I was to get infected with measles (as there are outbreaks now) what would my prognosis be as I’m on Tysabri? Everyone in my immediate family has MMR vax (as far as I am aware) as do my kids and wife.
Very good as you are immune to all three viruses and hence if exposed to the viruses your immune system will respond and prevent infection or only allow a very mild infection.
Would I be at more risk if I had just gotten an infusion and then was infected with measles or around someone who had it?
As Tysabri blocks the white cells going to my brain would that not mean my body couldn’t build an immune response post infusion inspite of having immunity toward measles?
It’s one thing that has made me quite anxious so glad to know most likely be fine if I had to deal with measles outbreak.
Is it only unvaccinated/ non immune with Tysabri that would have to be concerned.
Just wish this rise of anti vax would go away. In Australia we eradicated measles according to the WHO so it’s only imported cases we have to deal with.
Jul 13, 2023·edited Jul 13, 2023Liked by Gavin Giovannoni
I was always told to not have live vaccines, going back (even before) 1995 and Betaseron (Interferon). In my mind, whatever gets the MS machinery going (A + B + C = relapse), was possibly activated by live vaccines. I’ve avoided the flu since having (non-live) vaccines, which I started regularly after a significant relapse in 1992, just a few days after developing the flu, in case anyone is interested. (Figure the statistical odds of that.)
I started Ocrevus in 2018 until covid came along. No, I wasn’t told anything about the immunosuppressive effects of Ocrevus by the neurologist (on an MS team, supposedly “expert”). Then he retired and I was left to fend for myself as Covid enveloped the globe. It seemed Genentech/Roche were very “hush-hush” to my inquiries at the time, so given a lack of obvious disease activity, I stopped O. (I’m still the same, MS-wise, 65 years.) I realize this was all early on, and by paying attention now, for example monitoring this web site, there is a lot more good information to be had.
I used to do lots of travel clinics. So, correction, unless it’s changed recently: If you’ve ever had a yellow fever vaccination and received a yellow/green ‘certificate’ of vaccination (ICVP), it provides permission to travel for life, even if it carries an expiry date (which can be ignored). Only people living for extended periods in Yellow Fever endemic zones receive re-vaccination after 5 years. A standard letter from your GP is inadequate for international travel regulations relating to a yellow fever zone, if you want to travel unvaccinated, the ICVP needs to be signed and stamped with the yellow fever vaccination centre code to say you’re exempt. Lots of people travel unvaccinated, as the live vaccine carries risks for; those aged under six months or over 59 years and the immunosuppressed (for any reason). Any travel medicine professional should accurately assess your risk to enable you to make a fully informed decision. Before starting Ocrelizumab, I wasn’t offered, but sought out Pneumococcal (ppv23) vaccine, because it wouldn’t work as well afterwards and I didn’t want to hear any more excuses for delaying migration from Natalizumab - thank goodness for GPs who listen.
Just reply to the email MS-Selfie Newsletter you receive. In the past I would only do case studies for paying subscribers, but I have relaxed that rule.
I hear what you say, Prof G. But i dont spend lots of time reading about MS.
Its boring timeconsuming enough living with it (and my other diagnoses).
I'm spending my time (when im not exercising) on non-health stuff. im a multimedia artist and climate activist. Just led a walk (on my mobility scooter) for London Climate Action Week. Currently curating a theatre festival.
Just used my common sense when asking for shingles vax!
Nice to hear. My experience with early IRT treated patients is similar. Once they are in long term remission they forget they have MS and don't want to be reminded of it. More reason to bang the drum of early effective treatment.
Hi Prof G, I was on Ozanimod but started Ocrevus in 2021 and changed to Bonspri (Kempista) in 2022 and was not advised on vaccinations. Luckily/ unluckily my yellow fever had not expired last I travelled to Tanzania. It is now expired. All my Neuro said to me was that I wouldn’t build adequate immunity with a vaccine so I have not even done my covid vax, I also stopped getting the flu vax. Would you suggest continuing with the flu vax etc?
Yes, some immunity is better than no immunity. Anti-CD20 only blocks B-cell responses and not T-cell responses. So you should still be having all your vaccines, except for live viral vaccines.
Prof G is it expected that anti-CD20 drugs would affect her yellow fever antibody titres from the 2005 vaccine?
The Green Book states that the yellow fever vaccine would be expected to be life long but doesn't seem to have any information on the affect of anti-CD20 drugs on previous vaccinations, yet the travel clinic believe the treatment has had an impact.
I have never heard of this being discussed before treatment or titres being checked before/after (as they may be post AHSCT), but I haven't been on anti-CD20s.
Long-lived plasma cells that make antibodies from vaccines given years ago are not impacted by anti-CD20 therapies, which is why I suggested checking for antibodies against the virus as a marker of retained B-cell memory.
In addition, anti-CD20 therapies don't blunt recall/memory/booster responses as much as they blunt new antigen responses.
I am on Ocrevus and had to start it immediately as I was in a very bad relapse. I was diagnosed at age 49. My question is concerning Shingrex and Flu Vaccine. Should I still try and get these vaccines even though I am on Ocrevus. My neurologist says I might get some good reaction if I wait and get the vaccines 4-6 weeks before next infusion - but my blood work always shows no B cells repopulation. In addition, my neurologist has expressed concern in having a relapse with vaccines. I was fortunately able to get some Covid vaccines before being diagnosed and starting Ocrevus.
Hi, I was diagnosed Apr’20 with Tumefactive MS (now calmed to RRMS) and wasn’t informed of Vaccinations before infusion start. Having said that, my MS was highly active and in the words of my Neurologist, we were going to “hit it hard and hit it fast”. I was very ill, I needed 6 weeks in acute hospital + 6 weeks after in Rehabilitation to get well & strong. Therefore I really wasn’t in a position to ask, nor would I have been well enough to listen. I’m grateful for the care I was and still am being given in Beaumont Hospital, Dublin, Ireland.
I know I got a varicella zoster titer before I started fingolimod in 2018, and was told that I would not be able to get live vaccines, and at the point found out for myself that included Yellow Fever. In 2023, between Years 1 and 2 of cladribine, I was also asked to get Hep B and Shingles vaccines.
I travelled between round 1 and 2 of lemtrada to Tanzania for a safari. I couldn’t go to both Kenya and Tanzania because of not having a yellow fever certificate. I had a letter from the ms team to say I couldn’t have it and this was fine for entering Tanzania. My ms team didn’t discuss this with me before lemtrada but I don’t hold it against them
I was diagnosed last year and started on an anti-CD20 therapy, and was not offered vaccines beforehand. It did cross my mind but by that point I was so tired of self-advocating, I didn't have the capacity to push for yet another thing.
I specifically asked my neurologist for the shingrex vaccine before I start cladribine. She said it wasn't routine and she doesn't offer it!! I wasn't warned that the Covid vaccine was ineffective while on Ocrevus.
Why are we being ignored????? Do I refuse cladribine until after shingrex?
COVID-19 vaccine is not completely ineffective on anti-CD20 therapy. You can still make a T-cell response to the vaccine, but not a good antibody or B-cell response.
Shingrex is only available from September. You can have cladribine and have Shingrex when it becomes available in the UK. Vaccine responses seem to be maintained on cladribine regardless of where you are in the treatment cycle. However, live vaccines should only be given once counts are back to normal (lymphocyte counts > 1000/mm3) or near normal levels (lymphocyte counts >800/mm3).
That's very helpful. Thanks.
i already had lots of covid vax and got pneumovax before starting Kesimpta. I specifically asked for shingles vaccine - but this was refused. how come im smarter than the ms nurses/system? though that certainly wont be the first time!
A lot of pwMS know more about the subtleties of managing MS than their HCPs. You have more time to read, etc. Instead of being confrontational just send them the link for the Government''s change in policy. At the end of the day the management of MS needs to be a partnership between pwMS and their HCPs, which is what MS-Selfie is about.
"Empowering people with MS to self-manage their disease and to ask the right questions!"
i have been trying to get something out there to the public where we need more non live vaccines, especially for those that need boosters like MMR etc
i have had a huge up tick in vaccines since being on Tysabri just to be safe
ive had : Hep A, B, Tetanus, Typhoid, JESPECT, Polio booster, Covid Jabs, Meningitis, Pnemoccocl (spellling) shingrix
unfortunatley i didnt develop antibodies to Mumps so my MMR failed for that one, and as im now on Tysabri i cant get this
need more non live vaccines, MRNA etc
im also quite nervous of general mosquito borne viruses as we have had our first japanese encephalitis cases in australia now so i got jespect last year (even tho im at low risk, im not taking chances)
I’m on natalizumab for 10 years and previous vaccines were not mentioned, nor was I screened for immunity. However prior to my diagnosis - just a year before in fact - I had a HepB vaccination because of being in a high risk profession.
Did you do any serology? Maybe worth getting an mmr one to make sure
Does natalizumab prevent us from getting a Shingrex vaccine, and with the changes to the guidelines will we qualify for it even if our natulizumab treatment has already commenced? I don’t mind paying for it, I just desperately want to avoid getting it (I’m early 40s and have seen multiple (healthy) friends get bad cases of it at my age)
No! I got shingrex and am on Tysabri (37 years old) I’m in Australia and my dr just said here you go (it was a private script so I paid as it’s not free for under 50 here)
Shingrex is fine on natalizumab as it is a component vaccine. You only need to avoid live viral vaccines on natalizumab.
Just going back to this topic
I had some dialogue with Dr freedman who mentioned live vaccines are not constrained with Tysabri but I believed they were?
I just did another panel of serology and it confirms measles and rubella immunity but only equivocal immunity to mumps
If I was to get infected with measles (as there are outbreaks now) what would my prognosis be as I’m on Tysabri? Everyone in my immediate family has MMR vax (as far as I am aware) as do my kids and wife.
Very good as you are immune to all three viruses and hence if exposed to the viruses your immune system will respond and prevent infection or only allow a very mild infection.
Hi Prof G one last q regarding this topic
Would I be at more risk if I had just gotten an infusion and then was infected with measles or around someone who had it?
As Tysabri blocks the white cells going to my brain would that not mean my body couldn’t build an immune response post infusion inspite of having immunity toward measles?
Thanks Prof G.
It’s one thing that has made me quite anxious so glad to know most likely be fine if I had to deal with measles outbreak.
Is it only unvaccinated/ non immune with Tysabri that would have to be concerned.
Just wish this rise of anti vax would go away. In Australia we eradicated measles according to the WHO so it’s only imported cases we have to deal with.
I was always told to not have live vaccines, going back (even before) 1995 and Betaseron (Interferon). In my mind, whatever gets the MS machinery going (A + B + C = relapse), was possibly activated by live vaccines. I’ve avoided the flu since having (non-live) vaccines, which I started regularly after a significant relapse in 1992, just a few days after developing the flu, in case anyone is interested. (Figure the statistical odds of that.)
I started Ocrevus in 2018 until covid came along. No, I wasn’t told anything about the immunosuppressive effects of Ocrevus by the neurologist (on an MS team, supposedly “expert”). Then he retired and I was left to fend for myself as Covid enveloped the globe. It seemed Genentech/Roche were very “hush-hush” to my inquiries at the time, so given a lack of obvious disease activity, I stopped O. (I’m still the same, MS-wise, 65 years.) I realize this was all early on, and by paying attention now, for example monitoring this web site, there is a lot more good information to be had.
I used to do lots of travel clinics. So, correction, unless it’s changed recently: If you’ve ever had a yellow fever vaccination and received a yellow/green ‘certificate’ of vaccination (ICVP), it provides permission to travel for life, even if it carries an expiry date (which can be ignored). Only people living for extended periods in Yellow Fever endemic zones receive re-vaccination after 5 years. A standard letter from your GP is inadequate for international travel regulations relating to a yellow fever zone, if you want to travel unvaccinated, the ICVP needs to be signed and stamped with the yellow fever vaccination centre code to say you’re exempt. Lots of people travel unvaccinated, as the live vaccine carries risks for; those aged under six months or over 59 years and the immunosuppressed (for any reason). Any travel medicine professional should accurately assess your risk to enable you to make a fully informed decision. Before starting Ocrelizumab, I wasn’t offered, but sought out Pneumococcal (ppv23) vaccine, because it wouldn’t work as well afterwards and I didn’t want to hear any more excuses for delaying migration from Natalizumab - thank goodness for GPs who listen.
How can I submit a question to you to be answered as a Substack post like this one? Would I have to become a paid subscriber for that? Thank you
Just reply to the email MS-Selfie Newsletter you receive. In the past I would only do case studies for paying subscribers, but I have relaxed that rule.
I hear what you say, Prof G. But i dont spend lots of time reading about MS.
Its boring timeconsuming enough living with it (and my other diagnoses).
I'm spending my time (when im not exercising) on non-health stuff. im a multimedia artist and climate activist. Just led a walk (on my mobility scooter) for London Climate Action Week. Currently curating a theatre festival.
Just used my common sense when asking for shingles vax!
Nice to hear. My experience with early IRT treated patients is similar. Once they are in long term remission they forget they have MS and don't want to be reminded of it. More reason to bang the drum of early effective treatment.
Hi Prof G, I was on Ozanimod but started Ocrevus in 2021 and changed to Bonspri (Kempista) in 2022 and was not advised on vaccinations. Luckily/ unluckily my yellow fever had not expired last I travelled to Tanzania. It is now expired. All my Neuro said to me was that I wouldn’t build adequate immunity with a vaccine so I have not even done my covid vax, I also stopped getting the flu vax. Would you suggest continuing with the flu vax etc?
Yes, some immunity is better than no immunity. Anti-CD20 only blocks B-cell responses and not T-cell responses. So you should still be having all your vaccines, except for live viral vaccines.
Prof G is it expected that anti-CD20 drugs would affect her yellow fever antibody titres from the 2005 vaccine?
The Green Book states that the yellow fever vaccine would be expected to be life long but doesn't seem to have any information on the affect of anti-CD20 drugs on previous vaccinations, yet the travel clinic believe the treatment has had an impact.
I have never heard of this being discussed before treatment or titres being checked before/after (as they may be post AHSCT), but I haven't been on anti-CD20s.
Long-lived plasma cells that make antibodies from vaccines given years ago are not impacted by anti-CD20 therapies, which is why I suggested checking for antibodies against the virus as a marker of retained B-cell memory.
In addition, anti-CD20 therapies don't blunt recall/memory/booster responses as much as they blunt new antigen responses.
I am on Ocrevus and had to start it immediately as I was in a very bad relapse. I was diagnosed at age 49. My question is concerning Shingrex and Flu Vaccine. Should I still try and get these vaccines even though I am on Ocrevus. My neurologist says I might get some good reaction if I wait and get the vaccines 4-6 weeks before next infusion - but my blood work always shows no B cells repopulation. In addition, my neurologist has expressed concern in having a relapse with vaccines. I was fortunately able to get some Covid vaccines before being diagnosed and starting Ocrevus.
Hi, I was diagnosed Apr’20 with Tumefactive MS (now calmed to RRMS) and wasn’t informed of Vaccinations before infusion start. Having said that, my MS was highly active and in the words of my Neurologist, we were going to “hit it hard and hit it fast”. I was very ill, I needed 6 weeks in acute hospital + 6 weeks after in Rehabilitation to get well & strong. Therefore I really wasn’t in a position to ask, nor would I have been well enough to listen. I’m grateful for the care I was and still am being given in Beaumont Hospital, Dublin, Ireland.
I know I got a varicella zoster titer before I started fingolimod in 2018, and was told that I would not be able to get live vaccines, and at the point found out for myself that included Yellow Fever. In 2023, between Years 1 and 2 of cladribine, I was also asked to get Hep B and Shingles vaccines.
Hepatitis B is not recommended for everyone, only those working in high risk professions or with a high risk of exposure.
From the Green book: https://www.gov.uk/government/publications/hepatitis-b-the-green-book-chapter-18
The objective of the immunisation programme is to provide a minimum of three doses of hepatitis B vaccine for:
●infants, as part of the routine childhood immunisation programme, to protect against future exposure risks (pre-exposure immunisation)
●individuals at high risk of exposure to the virus or complications of the disease (preexposure immunisation).
●individuals who have already been exposed to the virus (post-exposure immunisation) including infants born to hepatitis B infected mothers
That's interesting! I'm not in the UK, but rather the US, which I didn't realize would be relevant when I posted the original comment
I travelled between round 1 and 2 of lemtrada to Tanzania for a safari. I couldn’t go to both Kenya and Tanzania because of not having a yellow fever certificate. I had a letter from the ms team to say I couldn’t have it and this was fine for entering Tanzania. My ms team didn’t discuss this with me before lemtrada but I don’t hold it against them