The newly emerging BA.2 variant is likely to be more infectious, with more household contacts becoming infected than the Omicron BA.1 variant and is likely to become dominant over the next few weeks.
Well this report has lifted my spirits! However I have many questions
A someone with progressive MS in a wheelchair categorised as clinically extremely vulnerable I have shielded for 2 years only going out for hospital appointments or anything outdoors which has meant during the colder months going nowhere.
While everyone seems to think things are easing I've not believed it because the government has lied so much.
Unlike some clinically vulnerable people I have read about in the Press, I did receive a priority PCR but after having used it after having felt unwell and having tried to chase a replacement neither 119 nor my GP had any idea about the priority test. All that 119 offered was to send a normal PCR test which I explained to them is not the same thing!!
While I did did eventually receive another priority PCR test I sent my GP the letter I received from NHS England clearly stating their role and even found a letter on the internet from NHS England to all GPS on the 9th of December again explaining their roles and the priority PCR. The answer I received from my GP was the government are quick to involve them but fail to inform them!
One question I do have is if you are away on holiday in England which I think I may try and do this summer and you feel unwell while away you can obviously take the PCR test with you but would the antivirals be delivered to your holiday accommodation?
Likewise are there plans to allow the clinically extremely vulnerable to take antivirals away with them on holiday should they ever feel confident enough to go abroad?
The Paxlovid antiviral you mention seems to have a lot of contraindications for many medications for example statins so is that antiviral really that good an idea for people with MS?
Regarding preventative measures I assume you still endorse wearing an ffp2 mask anywhere indoors?
Finally would you still consider eating in restaurants too risky for the clinically vulnerable?
Re: "Regarding preventative measures I assume you still endorse wearing an ffp2 mask anywhere indoors? Finally would you still consider eating in restaurants too risky for the clinically vulnerable?"
Not necessarily this is where personal choice comes into things. We are seeing many of our patients getting COVID-19, but the numbers being admitted seem to going down.
Re: "If offered paxlovid would you consider it to be safe?"
The following is in the SmPC, which is pretty clear on contraindications and drug-drug interactions:
.3 Contraindications
Paxlovid is contraindicated in patients:
- with a history of clinically significant hypersensitivity to the active substances (PF-07321332/ritonavir) or to any of the excipients listed in section 6.1.
- with severe hepatic impairment.
- with severe renal impairment.
Paxlovid is also contraindicated with medicinal products that are highly dependent on CYP3A for clearance and for which elevated plasma concentrations are associated with serious and/or life-threatening reactions. Paxlovid is also contraindicated with medicinal products that are potent CYP3A inducers where significantly reduced plasma PF-07321332/ritonavir concentrations may be associated with the potential for loss of virologic response and possible resistance.
Please see Table 1: Medicinal products for drugs that are contraindicated for concomitant use with PF-07321332/ritonavir.
I assume if you are on the vulnerable list and get COVID-19 you could get access vai the NHS througout the country. You may to go via the local COVID-19 hub. If you are outside the UK I am not sure.
I think this term should be dropped for pwMS now that we have targeted antivirals, enough ITU capacity and better ways of managing COVID-19. It is probably best reserved for people who are severely immunosuppressed. You may disagree, but the risk rheostat has moved.
No. People on ocrelizumab mono therapy are in my opinion only moderately immunosuppressed and tend to get specific types of infections, i.e. encapsulated bacterial infections and some viral infections. Please read my other newsletter on this for more information.
I am an MS patient in the UK, and I would be extremely grateful for your advice, as it is a question I have been asking since December and I have been passed around 3 hospital departments now as no-one can give me an answer.
My question is - what do I do if test positive for Covid 19?
To give you some background, I had my last Ocrevus infusion (my 4th dose) in March 2021. In January and February 2021 I had 2 doses of the Pfizer Vaccine 3 weeks apart. I then went on to have a 3rd dose of Pfizer at the end of September 2021, and became pregnant in late October 2021. I had a booster dose of Pfizer at the end of December 2021 - so approximately 9.5 months since my last Ocrevus infusion.
I realise that with the booster dose of Pfizer it may have been a sufficient amount of time for my B cells to be replenished to some degree and for me to mount a small antibody response to Covid 19. However, I realise that it still will not be at the level of the general population, and that I will also have some immunosuppression now from the pregnancy.
From what I have read the only available Covid treatment that 'might' be ok for pregnancy is Sotrovimab, but I would like to understand if it is a treatment I ought to be championing for if I test positive to Covid.
Also, I am coming up to 3 months since my Covid vaccine booster - should I just be asking for another booster at the end of March, as hopefully my B cells will have replenished even more so as it is a year now since my last Ocrevus infusion?
I am very concerned as to what the safest option will be for my baby - I am at 23 weeks now. As I said before I would be extremely grateful for any help you could give me with this situation - maternity after 2 months have now referred me to an infectious disease consultant about this, but I have yet to hear from them. As you are aware there are little restrictions in place any more, case numbers are rising again and I just feel that it is a matter of time before I contract Covid.
I have covered most of these issues in previous Newsletters (see below). The government has not announced 2nd-boosters yet, which in your case would be the 5th vaccine dose.
I wouldn't worry as you are likely to have some immunity and will be able to have an antiviral. I assume you are on the at-risk register that will give you access to antivirals. As you are pregnant they will almost certainly limit you to a monoclonal, which at the moment will be sotrovimab (Xevudy). This is not done via neurology or the GP, but the community based COVID-19 hubs. Many of our ocrelizumab patients are coming down with COVID-19 and are now doing very well. The BA1 and BA2 omicron variants are clearly not as serious as previous variants. At the moment COVID-19 is looking like a bad cold in most people. Let's hope the emerging delatcron and other variants are as benign. So I am advising my patients to start getting back to normal.
Thank you ever so much for getting back to me - as you can see it has been a worry for me for quite sometime! I will start looking to get back to 'normal.'
If you don't mind me asking, if I do get Covid and I am asymptomatic or have mild symptoms in the first 5 days of infection, would you recommend that I have one of the monoclonal treatments? (I am still a little concerned that there is not much data on this drug with pregnant women, but obviously I don't want to put my baby in danger from having severe Covid)
Are the Ocrelizumab patients that you are seeing with Covid 19, doing well because they have had the antivirals or monoclonal treatments? Or are many of them choosing not to have the Covid treatments?
Thanks again and the new post has been incredibly informative and reassuring.
Just out of interest will you be sharing this post with your colleagues at the Royal London? I ask as I am based at a hospital outside of London, but my neurologist is from the Royal London who has a clinic at our hospital twice a month. My MS nurse who I spoke to about 10 days ago said I was about the 4th pregnant woman at our hospital to have this query and they just didn’t know how to advise and were waiting for Maternity to come back with some advice. My nurse was keen for me to pass on any information to her if I heard anything.
I had my booster in late November and am 10 days behind the 6-month mark for my next Ocrevus infusion (my 4th one).
After consulting with my MSologist, the idea was to delay the next infusion by 1 month (relative to the 6-month mark) to see if I might be able to get the Omicron-specific booster.
However the media are no longer talking much about this booster and it now seems that it will not be available for several more weeks.
I am scheduled to get my infusion in about 2 weeks, so I likely will not be able to get the Omicron-specific booster unless I postpone my infusion by (at least) several more weeks.
Would your suggestion be to go ahead with my infusion as scheduled in late February?
To the best of my knowledge the Omicron boosters will only be in trials in March/April this year and hence a long way from being available to the general public. I suspect by the time the vaccines arrive for the Omicron variants (BA.1, BA.2, etc.) the pandemic will be over or there will be a be wave of new infections with a new immune escape variant. So my advice now that we have antivirals is to focus on getting having your MS managed.
Thank you for another informative slice of knowledge and hope! I am much better informed now on the whys and whens for getting a fourth vaccine - ocrelizumab and Pfizer for first 3 here.
Question: is your guidance the same for those of us on Ocrelizumab for “ If you are vaccinated and boosted there is no reason to self-isolate” ?
I’m a bit confused how to take the research you shared about Ocrelizumab with the guidance on how how cautious I need to be. Thank you!
Re: "I’m a bit confused how to take the research you shared about Ocrelizumab with the guidance on how how cautious I need to be."
I think what I am trying to say is that COVID-19 is derisking itself and that because MS DMTs therapies are only moderately immunosuppressive that it is time for pwMS who are self-isolating to start reintegrating into society. However, it remains important that they are still plugged into all the safety nets that have put in place to support them if the need arises.
"moderately immunosuppressive" = the concept I missed! That mashed up with COVID-19 de-risking itself makes a load of sense. Thanks for clarifying. This is very helpful..... I think I might be, maybe, ready to start reintegrating. Well, with a "plan" in place should the need arise ...... Onward !
Would you mind clarifying the rapid PCR test. I did read that they would be sent out to vulnerable people and therefore be at hand ready and waiting as it were. But I’ve not received one. Neither have people I know on chemo treatment who are definitely severely immune comprised. Thank you.
pwMS on Fingolimod – is it worthwhile them taking the booster ? Any technical paper that I have read re. COVID vaccine responses outlines that pwMS on Fingolimod fail to develop a meaningful B cell or T cell response to the vaccine - when it comes to COVID vaccine response Fingolimod (S1Ps) appears to be the “Black Sheep” of the DMTs ? The reason I ask is, I became quite ill after the initial COVID vaccine shots & I’m concerned about taking the booster, as I don’t want to have a repeat experience ? I subsequently wound up contracting COVID about 3 months ago, thankfully I had no major symptoms, I was very fortunate. Thank you Prof G for your ongoing input & the support you provide to pwMS.
"A state or period of remaining apart from others, especially in order to prevent the transmission or acquisition of COVID-19".
Some of my patients have had virtually no contact with anyone in 2-years. When my one patient needs to have phlebotomy she arranges to have her blood taken outside sitting in her car with her and the HCP wearing PPE. Similarly, she has had her vaccines given to her outside with the HCP wearing PPE. All a bit extreme considering the changes that have happened to the natural history and epidemiology of COVID-19.
I understand. I concede that after months of risk uncertainty, moving goalposts, and policies that do not respect the inherent worth of sick people, I am just very touchy when people talk about 'return to normal'. But I agree that young, healthy MSers should feel okay going to the grocery store in a high filtration mask if they want. I do (35yo, BMI 29, Fingolimod) - I hated ordering groceries and not being able to rework the menu when I couldn't get something key. I stopped again when the local positivity rate from omicron was at like 30% but have started back. I consider myself "informed cautious" and outside of surges do everything I used to (while wearing a kn95 mask!) except dining indoors and plane travel. I know I'm sort of rambling but maybe it will give someone else confidence.
Thanks for the helpful update. Re 3rd jabs being part of primary vaccinations for those on ocrelizumab, my understanding is this is only for those who were already on ocr at the time of dose 1 & 2. For anyone starting ocr after 1st & 2nd vaccination, the booster will not be considered part of primary, so no 4th doses for us I think.
Re: "For anyone starting ocrelizumab after 1st & 2nd vaccination, the booster will not be considered part of primary, so no 4th doses for us I think."
I am not sure the guidelines are this granular and are open to interpretation by your HCP. Tell them as you are on an anti-CD20 therapy that blunts vaccine responses and hence you should be offered a fourth or booster dose based on the government guidelines around patients who are immunosuppressed.
Thanks for this. Do you have any thoughts about pwMS who have had something equivalent to a flare following each of two doses of Moderna? My son experienced this and is hesitant to have a third vaccine. While he gradually improved following his second negative reaction to the vaccine, we feel he has never fully recovered. His MS is advanced so any loss of abilities is significant. We are wondering if switching to Pfizer or a non-mRNA vaccine would be advisable.
He may want to switch to Pfizer that is lower mRNA dose or take half dose of the Moderna vaccine, which is what is happening in the UK. The other is to use prophylactic paracetamol or an NSAID (ibuprofen) for 3-4 days after the vaccination to prevent the rise in temperature that occurs with the vaccines.
Well this report has lifted my spirits! However I have many questions
A someone with progressive MS in a wheelchair categorised as clinically extremely vulnerable I have shielded for 2 years only going out for hospital appointments or anything outdoors which has meant during the colder months going nowhere.
While everyone seems to think things are easing I've not believed it because the government has lied so much.
Unlike some clinically vulnerable people I have read about in the Press, I did receive a priority PCR but after having used it after having felt unwell and having tried to chase a replacement neither 119 nor my GP had any idea about the priority test. All that 119 offered was to send a normal PCR test which I explained to them is not the same thing!!
While I did did eventually receive another priority PCR test I sent my GP the letter I received from NHS England clearly stating their role and even found a letter on the internet from NHS England to all GPS on the 9th of December again explaining their roles and the priority PCR. The answer I received from my GP was the government are quick to involve them but fail to inform them!
One question I do have is if you are away on holiday in England which I think I may try and do this summer and you feel unwell while away you can obviously take the PCR test with you but would the antivirals be delivered to your holiday accommodation?
Likewise are there plans to allow the clinically extremely vulnerable to take antivirals away with them on holiday should they ever feel confident enough to go abroad?
The Paxlovid antiviral you mention seems to have a lot of contraindications for many medications for example statins so is that antiviral really that good an idea for people with MS?
Regarding preventative measures I assume you still endorse wearing an ffp2 mask anywhere indoors?
Finally would you still consider eating in restaurants too risky for the clinically vulnerable?
Re: "Regarding preventative measures I assume you still endorse wearing an ffp2 mask anywhere indoors? Finally would you still consider eating in restaurants too risky for the clinically vulnerable?"
Not necessarily this is where personal choice comes into things. We are seeing many of our patients getting COVID-19, but the numbers being admitted seem to going down.
If offered paxlovid would you consider it to be safe?
Also do you know anything about accessing antiviral if not at home and away on holiday?
Re: "If offered paxlovid would you consider it to be safe?"
The following is in the SmPC, which is pretty clear on contraindications and drug-drug interactions:
.3 Contraindications
Paxlovid is contraindicated in patients:
- with a history of clinically significant hypersensitivity to the active substances (PF-07321332/ritonavir) or to any of the excipients listed in section 6.1.
- with severe hepatic impairment.
- with severe renal impairment.
Paxlovid is also contraindicated with medicinal products that are highly dependent on CYP3A for clearance and for which elevated plasma concentrations are associated with serious and/or life-threatening reactions. Paxlovid is also contraindicated with medicinal products that are potent CYP3A inducers where significantly reduced plasma PF-07321332/ritonavir concentrations may be associated with the potential for loss of virologic response and possible resistance.
Please see Table 1: Medicinal products for drugs that are contraindicated for concomitant use with PF-07321332/ritonavir.
https://www.medicines.org.uk/emc/product/13145/smpc#CONTRAINDICATIONS
I assume if you are on the vulnerable list and get COVID-19 you could get access vai the NHS througout the country. You may to go via the local COVID-19 hub. If you are outside the UK I am not sure.
Do you know of an NHS England contact number because it is pointless asking my GP!
Re: " ... clinically extremely vulnerable..."
I think this term should be dropped for pwMS now that we have targeted antivirals, enough ITU capacity and better ways of managing COVID-19. It is probably best reserved for people who are severely immunosuppressed. You may disagree, but the risk rheostat has moved.
So is severely immunosupressed classed as someone on Ocrevus? thanks
No. People on ocrelizumab mono therapy are in my opinion only moderately immunosuppressed and tend to get specific types of infections, i.e. encapsulated bacterial infections and some viral infections. Please read my other newsletter on this for more information.
https://gavingiovannoni.substack.com/p/case-study-is-delayed-or-adaptive
Hi Professor G,
I am an MS patient in the UK, and I would be extremely grateful for your advice, as it is a question I have been asking since December and I have been passed around 3 hospital departments now as no-one can give me an answer.
My question is - what do I do if test positive for Covid 19?
To give you some background, I had my last Ocrevus infusion (my 4th dose) in March 2021. In January and February 2021 I had 2 doses of the Pfizer Vaccine 3 weeks apart. I then went on to have a 3rd dose of Pfizer at the end of September 2021, and became pregnant in late October 2021. I had a booster dose of Pfizer at the end of December 2021 - so approximately 9.5 months since my last Ocrevus infusion.
I realise that with the booster dose of Pfizer it may have been a sufficient amount of time for my B cells to be replenished to some degree and for me to mount a small antibody response to Covid 19. However, I realise that it still will not be at the level of the general population, and that I will also have some immunosuppression now from the pregnancy.
From what I have read the only available Covid treatment that 'might' be ok for pregnancy is Sotrovimab, but I would like to understand if it is a treatment I ought to be championing for if I test positive to Covid.
Also, I am coming up to 3 months since my Covid vaccine booster - should I just be asking for another booster at the end of March, as hopefully my B cells will have replenished even more so as it is a year now since my last Ocrevus infusion?
I am very concerned as to what the safest option will be for my baby - I am at 23 weeks now. As I said before I would be extremely grateful for any help you could give me with this situation - maternity after 2 months have now referred me to an infectious disease consultant about this, but I have yet to hear from them. As you are aware there are little restrictions in place any more, case numbers are rising again and I just feel that it is a matter of time before I contract Covid.
Thanks in advance for any help you can provide!
Alex
I have covered most of these issues in previous Newsletters (see below). The government has not announced 2nd-boosters yet, which in your case would be the 5th vaccine dose.
I wouldn't worry as you are likely to have some immunity and will be able to have an antiviral. I assume you are on the at-risk register that will give you access to antivirals. As you are pregnant they will almost certainly limit you to a monoclonal, which at the moment will be sotrovimab (Xevudy). This is not done via neurology or the GP, but the community based COVID-19 hubs. Many of our ocrelizumab patients are coming down with COVID-19 and are now doing very well. The BA1 and BA2 omicron variants are clearly not as serious as previous variants. At the moment COVID-19 is looking like a bad cold in most people. Let's hope the emerging delatcron and other variants are as benign. So I am advising my patients to start getting back to normal.
https://gavingiovannoni.substack.com/p/covid-19-update-the-ba2-variant-and?s=w
https://gavingiovannoni.substack.com/p/ocrelizumab-and-the-3rd-dose-of-the?s=w
https://gavingiovannoni.substack.com/p/case-study-covid-19-vaccine-choice?s=w
Hi Professor,
Thank you ever so much for getting back to me - as you can see it has been a worry for me for quite sometime! I will start looking to get back to 'normal.'
If you don't mind me asking, if I do get Covid and I am asymptomatic or have mild symptoms in the first 5 days of infection, would you recommend that I have one of the monoclonal treatments? (I am still a little concerned that there is not much data on this drug with pregnant women, but obviously I don't want to put my baby in danger from having severe Covid)
Are the Ocrelizumab patients that you are seeing with Covid 19, doing well because they have had the antivirals or monoclonal treatments? Or are many of them choosing not to have the Covid treatments?
https://gavingiovannoni.substack.com/p/spring-covid-19-update?s=w
Thanks again and the new post has been incredibly informative and reassuring.
Just out of interest will you be sharing this post with your colleagues at the Royal London? I ask as I am based at a hospital outside of London, but my neurologist is from the Royal London who has a clinic at our hospital twice a month. My MS nurse who I spoke to about 10 days ago said I was about the 4th pregnant woman at our hospital to have this query and they just didn’t know how to advise and were waiting for Maternity to come back with some advice. My nurse was keen for me to pass on any information to her if I heard anything.
Thanks very much for this post, Prof. G.
I had my booster in late November and am 10 days behind the 6-month mark for my next Ocrevus infusion (my 4th one).
After consulting with my MSologist, the idea was to delay the next infusion by 1 month (relative to the 6-month mark) to see if I might be able to get the Omicron-specific booster.
However the media are no longer talking much about this booster and it now seems that it will not be available for several more weeks.
I am scheduled to get my infusion in about 2 weeks, so I likely will not be able to get the Omicron-specific booster unless I postpone my infusion by (at least) several more weeks.
Would your suggestion be to go ahead with my infusion as scheduled in late February?
To the best of my knowledge the Omicron boosters will only be in trials in March/April this year and hence a long way from being available to the general public. I suspect by the time the vaccines arrive for the Omicron variants (BA.1, BA.2, etc.) the pandemic will be over or there will be a be wave of new infections with a new immune escape variant. So my advice now that we have antivirals is to focus on getting having your MS managed.
Thank you very much, Prof. G!
Thank you for another informative slice of knowledge and hope! I am much better informed now on the whys and whens for getting a fourth vaccine - ocrelizumab and Pfizer for first 3 here.
Question: is your guidance the same for those of us on Ocrelizumab for “ If you are vaccinated and boosted there is no reason to self-isolate” ?
I’m a bit confused how to take the research you shared about Ocrelizumab with the guidance on how how cautious I need to be. Thank you!
Re: "I’m a bit confused how to take the research you shared about Ocrelizumab with the guidance on how how cautious I need to be."
I think what I am trying to say is that COVID-19 is derisking itself and that because MS DMTs therapies are only moderately immunosuppressive that it is time for pwMS who are self-isolating to start reintegrating into society. However, it remains important that they are still plugged into all the safety nets that have put in place to support them if the need arises.
"moderately immunosuppressive" = the concept I missed! That mashed up with COVID-19 de-risking itself makes a load of sense. Thanks for clarifying. This is very helpful..... I think I might be, maybe, ready to start reintegrating. Well, with a "plan" in place should the need arise ...... Onward !
Would you mind clarifying the rapid PCR test. I did read that they would be sent out to vulnerable people and therefore be at hand ready and waiting as it were. But I’ve not received one. Neither have people I know on chemo treatment who are definitely severely immune comprised. Thank you.
https://www.gov.uk/government/publications/pcr-home-testing-for-people-eligible-for-new-covid-19-treatments
pwMS on Fingolimod – is it worthwhile them taking the booster ? Any technical paper that I have read re. COVID vaccine responses outlines that pwMS on Fingolimod fail to develop a meaningful B cell or T cell response to the vaccine - when it comes to COVID vaccine response Fingolimod (S1Ps) appears to be the “Black Sheep” of the DMTs ? The reason I ask is, I became quite ill after the initial COVID vaccine shots & I’m concerned about taking the booster, as I don’t want to have a repeat experience ? I subsequently wound up contracting COVID about 3 months ago, thankfully I had no major symptoms, I was very fortunate. Thank you Prof G for your ongoing input & the support you provide to pwMS.
I'm curious what your definition of "self-isolation" is?
"A state or period of remaining apart from others, especially in order to prevent the transmission or acquisition of COVID-19".
Some of my patients have had virtually no contact with anyone in 2-years. When my one patient needs to have phlebotomy she arranges to have her blood taken outside sitting in her car with her and the HCP wearing PPE. Similarly, she has had her vaccines given to her outside with the HCP wearing PPE. All a bit extreme considering the changes that have happened to the natural history and epidemiology of COVID-19.
I understand. I concede that after months of risk uncertainty, moving goalposts, and policies that do not respect the inherent worth of sick people, I am just very touchy when people talk about 'return to normal'. But I agree that young, healthy MSers should feel okay going to the grocery store in a high filtration mask if they want. I do (35yo, BMI 29, Fingolimod) - I hated ordering groceries and not being able to rework the menu when I couldn't get something key. I stopped again when the local positivity rate from omicron was at like 30% but have started back. I consider myself "informed cautious" and outside of surges do everything I used to (while wearing a kn95 mask!) except dining indoors and plane travel. I know I'm sort of rambling but maybe it will give someone else confidence.
Thanks for the helpful update. Re 3rd jabs being part of primary vaccinations for those on ocrelizumab, my understanding is this is only for those who were already on ocr at the time of dose 1 & 2. For anyone starting ocr after 1st & 2nd vaccination, the booster will not be considered part of primary, so no 4th doses for us I think.
Re: "For anyone starting ocrelizumab after 1st & 2nd vaccination, the booster will not be considered part of primary, so no 4th doses for us I think."
I am not sure the guidelines are this granular and are open to interpretation by your HCP. Tell them as you are on an anti-CD20 therapy that blunts vaccine responses and hence you should be offered a fourth or booster dose based on the government guidelines around patients who are immunosuppressed.
Thanks for this. Do you have any thoughts about pwMS who have had something equivalent to a flare following each of two doses of Moderna? My son experienced this and is hesitant to have a third vaccine. While he gradually improved following his second negative reaction to the vaccine, we feel he has never fully recovered. His MS is advanced so any loss of abilities is significant. We are wondering if switching to Pfizer or a non-mRNA vaccine would be advisable.
He is likely to have had a pseudo-relapse. Please see the following Newsletter that explains it.
https://gavingiovannoni.substack.com/p/case-study-am-i-having-a-relapse
He may want to switch to Pfizer that is lower mRNA dose or take half dose of the Moderna vaccine, which is what is happening in the UK. The other is to use prophylactic paracetamol or an NSAID (ibuprofen) for 3-4 days after the vaccination to prevent the rise in temperature that occurs with the vaccines.