A change in philosophy is telling us that public health officials are currently playing the endgame of the COVID-19 pandemic. This in itself must be good news and even more so as Spring has arrived.
I want to add that everyone should expect to get COVID-19 at some stage, be it asymptomatic, mild, moderate or severe. The important thing to realise is that the COVID-19 vaccines and immunity from previous infections has shifted the curve to the less so there will be a smaller number of people with severe COVID-19.
To repeat: EVERYONE SHOULD EXPECT TO GET COVID-19 AT SOME STAGE.
I would not mind all of this too much if I could at least get EvuSheld and Paxlovid was available but alas, 'let's drop masks and everything, but no medication for you. Oh and of course, do pay your taxes on time'. As it stands, I got screwed, massively.
They are being rashioned for people who are the most vulnerable. If you are on the vulnerable list you will get Paxlovid. The criteria for getting EvuSheld on the NHS have not been determined yet, but I sure the most deserving will get it.
In my case, it is not a question of rationing - that would be a lot more acceptable. It's really the ineffectiveness of swissmedic in approving Covid treatments is hard to take. Neither Evusheld nor Paxlovid are approved for reasons only the bureaucrats can understand.
…and now I find myself enjoying your posts for the beautiful word smithery…. “This in itself must be good news and even more so as Spring has arrived.”
That really is a most perfectly constructed string of words.
Genuinely, you have merged the liberal arts and science and hope….bravo!
As for the content, thank you for scribing again on Covid. Reading this one is a huge aid to my dipping toes into the wide world again….
RRMS, on ocrelizimab, vaccinated and boosted - your guidance these past two years has been ever helpful. My neurologist steered me to follow your posts & I’m very thankful he did. From the shores of my spring break, Cheers!
1. Many Medics are saying that while it is good to try and get back to normal not using masks and letting covid run wild is a very bad idea. You do not seem to belong to this school of thought why is that? What about the talk of of potential brain volume loss after contracting even milder forms of the virus?
2.The additional booster set to be offered in March and April is only being offered to the over 75s and the severely immunosuppressed. Why are those who were categorised as clinically extremely vulnerable but do not fall under the category over 75s or severely immuno suppressed excluded? For example I have fairly advanced MS and I'm a wheelchair user and had my last booster at the beginning of October so surely I would benefit from a top up because in some ways I am more vulnerable than a healthy over 75.?
3. Finally regarding antivirals I have questions which neither my.gp nor 119 can answer.
If away on holiday in this country and you have to use your priority PCR test and it is posted where you are will you be able to get the antivirals delivered to your holiday destination in the UK?
If away abroad on holiday obviously the PCR test cannot be posted so will there be the option to take antivirals away with you very much like people take antibiotics away with them in case required? Or has no one thought of this?
Re: "Many Medics are saying that while it is good to try and get back to normal not using masks and letting covid run wild is a very bad idea. You do not seem to belong to this school of thought why is that? What about the talk of of potential brain volume loss after contracting even milder forms of the virus?"
The brain loss data applies to the earlier more pathogenic strains. In reality Omicron BA1 and BA2 are new strains and you can't apply data from older strains to the current ones.
Yes, I am broadly in support of the current strategy. We can't keep society, including the vulnerable locked up forever. At some point economic and social considerations have to take precedence over the concerns of individuals who are vulnerable. Saying this the vulnerable are being protected with antivirals, etc. We are at a stage where it is time to get back to normal. Please don't forget all pandemics eventually come to an end; this one will come to an end as well.
Thank you for all of your replies but but what did you think about my observation that the clinically extremely vulnerable are not set to be offered a further vaccination unless they are over 75 or severely immuno compromised?
I think this is a simple oversight at the moment and the guidance will change. What is needed are the next generation of vaccines and that may be what the Government is waiting for.
It is clear that vaccines are not necessarily a solution to the immunocompromised because they can't really mount an adequate immune response to the vaccine. So giving endless boosters is a futile process. Much better to have a system in place for prophylactic antivirals or rapid treatment of COVID-19.
I agree that giving the severely immunocompromised multiple boosters may prove ineffective but I would have thought that the clinically vulnerable who had their Vaccines 6 months ago and who do mount an immune response should be included in this extra course
I just wish they still promoted mask wearing because wearing a mask does not stop us getting back to normal but not wearing a mask can cause somebody who is vulnerable a serious problem
Re: "If away abroad on holiday obviously the PCR test cannot be posted so will there be the option to take antivirals away with you very much like people take antibiotics away with them in case required? Or has no one thought of this?"
Yes, there is no mechanism at present of taking antivirals with you. This is not really practical at the moment, but it may happen in the future when there is no rationing of supplies.
Re: "If away on holiday in this country and you have to use your priority PCR test and it is posted where you are will you be able to get the antivirals delivered to your holiday destination in the UK?"
Yes, if you are going on holiday in England. The system in Scotland is different to that in England and I have one English patient who could not navigate the Scottish system.
Thanks for the helpful post. I received my fifth vaccine here in Germany last week. They were very worried how poorly I'd responded to the previous vaccines, ie no antibodies or T cell response so I received off-label use of Novavax. I was told last week I'd be at risk of an incredibly severe case of Covid-19 and that while Omicron is milder there are still individuals ending up very ill and dying and there's no way to account for me not ending up in that bracket. Mentally the constant isolation is taking its toll on me and I am considering stopping Ocrevus or pushing out to a yearly infusion. In last 2 years I have gone from needing a wheelchair to being able to go on 5km hikes. I'm terrified getting Covid will undo all the hard rehabilitation work I have put in. Due to being on other meds (Baclofen, Tramadol, Lyrica - although gradually weaning off the later two) I'm also aware antivirals may not be an option for me and moniclonal antibodies are becoming less effective so there is nothing there to help me fight the virus. Honestly I'm terrified and I feel like the anxiety is taking its toll on my health, which is why I'm wondering if I should pause Ocrevus for a while to try and generate an immune response to the vaccines.
Re: " I'm wondering if I should pause Ocrevus for a while to try and generate an immune response to the vaccines."
You will need to discuss this with your neurologist. However, in general I don't think COVID-19 per say and blunted antibody responses to the vaccine are now a reason to delay or switch treatment. If we let COVID-19 influence in this way we will have to respond in a similar way to the next viral epidemic.
I think pwMS on immunosuppressive therapies are going to have to learn to live with the fact that to have their MS managed appropriately it comes with risks. Please be aware that as a class anti-CD20 therapies are not that immunosuppressive and have quite a good safety profile overall.
Moderna are recruiting for their 4th dose trial. I met the criteria but there was some doubt about whether my data reached its destination. I would love a 4th dose as I do like to be out and about MS notwithstanding. Do you know how I can retry to get on this, other than be part of research, NIHR, or the portal they used?
Thanks for the update Prof G. I’m on ocrelizumab and made no antibody response to my 3 vaccines. I’m having my 4th/booster later this month 3 months after my last infusion. Do you think I might be eligible for the new Evusheld?
Unlikely, most patients on anti-CD20 deal with COVID-19 without a problem. I suspect it will be reserved for the extremely vulnerable, e.g. those having bone marrow transplants and with severe immune deficiencies. Please be aware that over time all the therapeutic monoclonals will lose their effectiveness as new variants emerge.
Thanks Prof G, I’ve not yet had COVID having WFH and been cautious in my behaviour. I’m seriously wondering if it’s better to have it now. Would I develop natural antibodies or would ocrevus prevent that too?
Thought I’d update to report that I tested positive on 23rd March and had paxlovid. Got 2 negatives on Day 8 and 9. Still symptomatic so tested again yesterday and positive again. Is this because the paxlovid lowered my viral load but this has now bounced back up? Does the fact that I’m immunosuppressed mean I’m taking longer to clear the virus? Will I be offered further treatment? My experience getting the paxlovid wasn’t exactly seamless and my MS nurse had to get it sorted. I wasn’t called automatically as per the text/email and my GP and 111 didn’t have a clue what I was on about when I called them to escalate as per the NHS advice 🙄
Re: " tested again yesterday and positive again.."
There are several reasons for this:
1. No test is perfect and the negative test yesterday could have been a false negative.
2. Yes, Paxlovid could have lowered your viral load that is now bouncing back
3. More worrying the new virus you are detecting could theoretically be resistant to Paxlovid and is now replicating. Sadly it is only a matter of time before resistant strains emerge.
Hi Prof G, thanks for replying. To clarify my negative tests x 2 were last week on Days 8 and 9 and yesterday’s was positive again on Day 15. Do you think I’ll be offered more treatment?
Re: "My experience getting the paxlovid wasn’t exactly seamless"
Yes, this seems to be a common experience. What worries me is what happens to people who are vulnerable and don't have the necessary health literacy to make things happen. This is how education, health literacy, etc. affects health outcomes.
I've just tested positive for second time in 3 weeks. Caught covid on 1 March having Ocrevus at hospital where temperature was taken orally every 30 mins in crowded, unventilated room. After anti virals felt fine. Then fell ill again on 21st March. I had antibodies on 26 March. I feel dreadful after 10 days. I have around 1 hour a day when I don't feel really, really ill. Severe nasal and mouth dryness make swallowing & sleeping difficult. I suspect Covid has triggered Sjogrens.
This is really awful and I wish I had not started Ocrevus. My body is not coping. The lack of sleep is impacting my MS.
If you have to go to hospital, refuse oral temperature. I have worn a N95 mask throughout the pandemic but fell ill by removing it every 30mins in hospital for temperature check.
I wonder if Omicron has evolved from Mus Muscaris, the house mouse, which apparently, has plenty of ACE2 receptors. Communities of mice would be wiped out by a severe strain, but spread a mild strain, which then jumps back to us. Just a thought.
I want to add that everyone should expect to get COVID-19 at some stage, be it asymptomatic, mild, moderate or severe. The important thing to realise is that the COVID-19 vaccines and immunity from previous infections has shifted the curve to the less so there will be a smaller number of people with severe COVID-19.
To repeat: EVERYONE SHOULD EXPECT TO GET COVID-19 AT SOME STAGE.
I would not mind all of this too much if I could at least get EvuSheld and Paxlovid was available but alas, 'let's drop masks and everything, but no medication for you. Oh and of course, do pay your taxes on time'. As it stands, I got screwed, massively.
They are being rashioned for people who are the most vulnerable. If you are on the vulnerable list you will get Paxlovid. The criteria for getting EvuSheld on the NHS have not been determined yet, but I sure the most deserving will get it.
In my case, it is not a question of rationing - that would be a lot more acceptable. It's really the ineffectiveness of swissmedic in approving Covid treatments is hard to take. Neither Evusheld nor Paxlovid are approved for reasons only the bureaucrats can understand.
…and now I find myself enjoying your posts for the beautiful word smithery…. “This in itself must be good news and even more so as Spring has arrived.”
That really is a most perfectly constructed string of words.
Genuinely, you have merged the liberal arts and science and hope….bravo!
As for the content, thank you for scribing again on Covid. Reading this one is a huge aid to my dipping toes into the wide world again….
RRMS, on ocrelizimab, vaccinated and boosted - your guidance these past two years has been ever helpful. My neurologist steered me to follow your posts & I’m very thankful he did. From the shores of my spring break, Cheers!
Thank you for this update I have some questions
1. Many Medics are saying that while it is good to try and get back to normal not using masks and letting covid run wild is a very bad idea. You do not seem to belong to this school of thought why is that? What about the talk of of potential brain volume loss after contracting even milder forms of the virus?
2.The additional booster set to be offered in March and April is only being offered to the over 75s and the severely immunosuppressed. Why are those who were categorised as clinically extremely vulnerable but do not fall under the category over 75s or severely immuno suppressed excluded? For example I have fairly advanced MS and I'm a wheelchair user and had my last booster at the beginning of October so surely I would benefit from a top up because in some ways I am more vulnerable than a healthy over 75.?
3. Finally regarding antivirals I have questions which neither my.gp nor 119 can answer.
If away on holiday in this country and you have to use your priority PCR test and it is posted where you are will you be able to get the antivirals delivered to your holiday destination in the UK?
If away abroad on holiday obviously the PCR test cannot be posted so will there be the option to take antivirals away with you very much like people take antibiotics away with them in case required? Or has no one thought of this?
Re: "Many Medics are saying that while it is good to try and get back to normal not using masks and letting covid run wild is a very bad idea. You do not seem to belong to this school of thought why is that? What about the talk of of potential brain volume loss after contracting even milder forms of the virus?"
The brain loss data applies to the earlier more pathogenic strains. In reality Omicron BA1 and BA2 are new strains and you can't apply data from older strains to the current ones.
Yes, I am broadly in support of the current strategy. We can't keep society, including the vulnerable locked up forever. At some point economic and social considerations have to take precedence over the concerns of individuals who are vulnerable. Saying this the vulnerable are being protected with antivirals, etc. We are at a stage where it is time to get back to normal. Please don't forget all pandemics eventually come to an end; this one will come to an end as well.
Thank you for all of your replies but but what did you think about my observation that the clinically extremely vulnerable are not set to be offered a further vaccination unless they are over 75 or severely immuno compromised?
I think this is a simple oversight at the moment and the guidance will change. What is needed are the next generation of vaccines and that may be what the Government is waiting for.
It is clear that vaccines are not necessarily a solution to the immunocompromised because they can't really mount an adequate immune response to the vaccine. So giving endless boosters is a futile process. Much better to have a system in place for prophylactic antivirals or rapid treatment of COVID-19.
I agree that giving the severely immunocompromised multiple boosters may prove ineffective but I would have thought that the clinically vulnerable who had their Vaccines 6 months ago and who do mount an immune response should be included in this extra course
I just wish they still promoted mask wearing because wearing a mask does not stop us getting back to normal but not wearing a mask can cause somebody who is vulnerable a serious problem
Re: "If away abroad on holiday obviously the PCR test cannot be posted so will there be the option to take antivirals away with you very much like people take antibiotics away with them in case required? Or has no one thought of this?"
Yes, there is no mechanism at present of taking antivirals with you. This is not really practical at the moment, but it may happen in the future when there is no rationing of supplies.
Re: "If away on holiday in this country and you have to use your priority PCR test and it is posted where you are will you be able to get the antivirals delivered to your holiday destination in the UK?"
Yes, if you are going on holiday in England. The system in Scotland is different to that in England and I have one English patient who could not navigate the Scottish system.
Thanks for the helpful post. I received my fifth vaccine here in Germany last week. They were very worried how poorly I'd responded to the previous vaccines, ie no antibodies or T cell response so I received off-label use of Novavax. I was told last week I'd be at risk of an incredibly severe case of Covid-19 and that while Omicron is milder there are still individuals ending up very ill and dying and there's no way to account for me not ending up in that bracket. Mentally the constant isolation is taking its toll on me and I am considering stopping Ocrevus or pushing out to a yearly infusion. In last 2 years I have gone from needing a wheelchair to being able to go on 5km hikes. I'm terrified getting Covid will undo all the hard rehabilitation work I have put in. Due to being on other meds (Baclofen, Tramadol, Lyrica - although gradually weaning off the later two) I'm also aware antivirals may not be an option for me and moniclonal antibodies are becoming less effective so there is nothing there to help me fight the virus. Honestly I'm terrified and I feel like the anxiety is taking its toll on my health, which is why I'm wondering if I should pause Ocrevus for a while to try and generate an immune response to the vaccines.
Re: " I'm wondering if I should pause Ocrevus for a while to try and generate an immune response to the vaccines."
You will need to discuss this with your neurologist. However, in general I don't think COVID-19 per say and blunted antibody responses to the vaccine are now a reason to delay or switch treatment. If we let COVID-19 influence in this way we will have to respond in a similar way to the next viral epidemic.
I think pwMS on immunosuppressive therapies are going to have to learn to live with the fact that to have their MS managed appropriately it comes with risks. Please be aware that as a class anti-CD20 therapies are not that immunosuppressive and have quite a good safety profile overall.
In all my readings and researching, I was not aware: “that as a class anti-CD20 therapies are not that immunosuppressive ”.
Any suggestions where to read more about this? Ocrelizumab here and curious. Would love to learn more!
I cover the issue of serious infections and malignancies in the following newsletter.
https://gavingiovannoni.substack.com/p/case-study-is-delayed-or-adaptive?s=w
Immunosuppression is a complex issue and I covered it superficially in the following newsletter as well:
https://gavingiovannoni.substack.com/p/how-immunosuppressed-are-you?s=w
I may expand on this in a future newsletter.
Thank you - very helpful. I had thought being on ocrelizimab was very immunosuppressive. Details matter!
Moderna are recruiting for their 4th dose trial. I met the criteria but there was some doubt about whether my data reached its destination. I would love a 4th dose as I do like to be out and about MS notwithstanding. Do you know how I can retry to get on this, other than be part of research, NIHR, or the portal they used?
Kit, apologies I can't help you here. You will need to contact your local recruiting site.
That fine. It was a bit of a cheeky ask. I will try the Science Park near the teaching hospital.
Thanks for the update Prof G. I’m on ocrelizumab and made no antibody response to my 3 vaccines. I’m having my 4th/booster later this month 3 months after my last infusion. Do you think I might be eligible for the new Evusheld?
Unlikely, most patients on anti-CD20 deal with COVID-19 without a problem. I suspect it will be reserved for the extremely vulnerable, e.g. those having bone marrow transplants and with severe immune deficiencies. Please be aware that over time all the therapeutic monoclonals will lose their effectiveness as new variants emerge.
Thanks Prof G, I’ve not yet had COVID having WFH and been cautious in my behaviour. I’m seriously wondering if it’s better to have it now. Would I develop natural antibodies or would ocrevus prevent that too?
Unfortunately, being B-cell depleted also blunts antibody responses to wild-type infection. But don't forget you have T-cells.
Thought I’d update to report that I tested positive on 23rd March and had paxlovid. Got 2 negatives on Day 8 and 9. Still symptomatic so tested again yesterday and positive again. Is this because the paxlovid lowered my viral load but this has now bounced back up? Does the fact that I’m immunosuppressed mean I’m taking longer to clear the virus? Will I be offered further treatment? My experience getting the paxlovid wasn’t exactly seamless and my MS nurse had to get it sorted. I wasn’t called automatically as per the text/email and my GP and 111 didn’t have a clue what I was on about when I called them to escalate as per the NHS advice 🙄
Re: " tested again yesterday and positive again.."
There are several reasons for this:
1. No test is perfect and the negative test yesterday could have been a false negative.
2. Yes, Paxlovid could have lowered your viral load that is now bouncing back
3. More worrying the new virus you are detecting could theoretically be resistant to Paxlovid and is now replicating. Sadly it is only a matter of time before resistant strains emerge.
Hi Prof G, thanks for replying. To clarify my negative tests x 2 were last week on Days 8 and 9 and yesterday’s was positive again on Day 15. Do you think I’ll be offered more treatment?
Re: "My experience getting the paxlovid wasn’t exactly seamless"
Yes, this seems to be a common experience. What worries me is what happens to people who are vulnerable and don't have the necessary health literacy to make things happen. This is how education, health literacy, etc. affects health outcomes.
Re: "Does the fact that I’m immunosuppressed mean I’m taking longer to clear the virus?"
Yes, this is a possibility. Immunosuppression is associated with longer viral clearance and sadly the development of mutants.
I've just tested positive for second time in 3 weeks. Caught covid on 1 March having Ocrevus at hospital where temperature was taken orally every 30 mins in crowded, unventilated room. After anti virals felt fine. Then fell ill again on 21st March. I had antibodies on 26 March. I feel dreadful after 10 days. I have around 1 hour a day when I don't feel really, really ill. Severe nasal and mouth dryness make swallowing & sleeping difficult. I suspect Covid has triggered Sjogrens.
This is really awful and I wish I had not started Ocrevus. My body is not coping. The lack of sleep is impacting my MS.
If you have to go to hospital, refuse oral temperature. I have worn a N95 mask throughout the pandemic but fell ill by removing it every 30mins in hospital for temperature check.
I wonder if Omicron has evolved from Mus Muscaris, the house mouse, which apparently, has plenty of ACE2 receptors. Communities of mice would be wiped out by a severe strain, but spread a mild strain, which then jumps back to us. Just a thought.