Glad to hear you’re feeling better, Prof G. Covid is horrid, and I feel awful for anyone contracting it, let alone anyone with MS.
My experience is a mixed bag: I haven’t contracted Covid yet and have had a vaccination with multiple boosters, but I also haven’t been on any DMT for over 2 1/2 years because my neurologist was afraid of my losing virus protection. My immune system has been fully reconstituted for a while now, and my disability has progressed—much more due to multiple UTIs, but also because of no DMT to mitigate damage. It’s horribly difficult to make decisions about all these things sometimes. But it probably wouldn’t be as difficult if my disease wasn’t so progressed… it would leave me more wiggle room if I didn’t choose correctly. Now everything has to be extremely carefully thought out, and I have to be prepared to accept very difficult decisions with heavy consequences. I don’t know if it will do much at this point, but I am supposed to start Mavenclad soon. I just wish the CHARIOT trial had completed already, as it would be really helpful to have that information available before I start the cladribine.
I really appreciate and understand the concerns of pwMS about Covid and getting the best protection. I never understood the problems with acceptance of medications and therapies from one country to the next when the scientific community is worldwide, and science is universal. You would think it would be a better world if we all worked to help each other. It seems like most do, so maybe it’s just the bureaucracies that make it so difficult. Hopefully we’ll get a better chance at things with some of the researchers using quantum computers and AI to comb through billions and trillions of bits of data to find new solutions, and stay ahead of the viruses.
Just one other thought… as far as EBV and MS. I have also read that herpes zoster virus has been implicated as well. Maybe it could possibly be different viruses for different people that hide in the nervous system and cause MS due to other ancillary factors.
Professor G, first, I’m so happy to hear you’re feeling better. Thank goodness! I have thus far been a recluse and a persistent masker, so I’ve managed to avoid Covid thus far. My neurologist would like to try a trial with an immune suppressant for six months due to increasing cognitive issues, and recommends the zoster vaccine first, though I’m in the middle of (yet another) outbreak so I must delay it. She also recommends skipping my second booster unless one is specific for a variant. Have you or anyone heard of this tact? Be well, all!
Hi although not confirmed I am sure I had covid in the beginning before it was flagged up. At the time I was thinking virus pointless going to the drs, cough was horrendous!! I was putting vick up my nostrils to help breathe at night. I can honestly say at no point did covid impact my MS. I opted for the jab AstraZeneca which did impact my Ms stabbing pains down my spine weird! Then Ms symptoms which I haven't suffered from in the last 10yrs. I gave it the benefit of the doubt and had the 2nd AstraZeneca jab. It started again stabbing pains yet again down my spine! Ect. That put an end to me considering any more jabs, I am out and about 24/7 public transport getting on with my life. I haven't contracted covid since, one thing I am curious about trials for statins what was the outcome in people with Ms? Annette
I'm really curious as to why Evusheld is not being used by NHS and likes of Ireland. Surely in groups not responding to vaccination, Evusheld - even when loosing its effectiveness with the most recent Omicron strain - is still far more effective than failed vaccines. The reason I ask is that I was living in Germany for a while, had 5 vaccines as of March, all of which were shown in blood tests to have totally failed due to me being on Ocrevus. Evusheld is now being used over there for many people like me but months on Ireland is still debating if it's cost effective. I just would love to understand why there is such reluctance in UK and Ireland to use it. I still keep in touch with my German consultant and they are seeing much better levels of protection and recovery in people like me who have needed it.
Glad to hear you are recovering from Covid. I'm on Gilenya & I have failed to build a response to any of the Covid vaccine shots received todate. Having have taken all of the Covid shots offered tome todate, I did get very ill on two separate occasions after receiving my Covid shot - I'm now questioning the merit for someone like myself taking the fifth shot ? I'm afraid of getting ill again if I take the fifth shot & if I'm highly unlikely to develop a response, is there any benefit ? I got Covid twice in 2021, thankfully I was not very ill on both occasions .
Thank you Prof G, I’m glad you are on the mend and back into exercise. I have been able to avoid infection so far but my partner who is not a pwMS does have long covid after an asymptomatic infection in January. He doesn’t have cog-fog or fatigue but does have all the gastric/ibs/acid symptoms, alongside random moments of breathlessness (that isn’t remedied by inhaler he was given), random changes to pulse, temperature regulation and most annoying for him - exercise intolerance which increases all the symptoms significantly for several days after. PPI’s are not impacting. Hopefully it’s just a case of time?!!
Being prone to EBV-reactivations (and hence familiar with the symptoms) myself, I strongly believe the symptoms now ascribed to 'long covid' could be due to EBV-reactivation.
It's no secret that infections (with strong immune response) are a trigger for EBV-reactivations.
There are some papers that notice evidence of recent EBV-reactivation in long covid-cases.
I feel there's more merit to study the phenomenon of post-viral EBV-reactivation as a cause of post-viral asthenia, and treat what is called 'long covid' as a subtype of this, rather than to be fixated on 'long covid' as such.
I heard this while going through my first COVID-19 episode myself. I also had a successful HSCT in March this year. As part of my post HSCT prophylactic treatment I'm using an antiviral Acyclovir but I am not sure that is specific enough against corona virus. I am curious about what you say about long-covid and the possibility of triggering EBV. Do you know if there are any signs/symptoms to look for, or is it only a CSF sample that can test this? I guess the HSCT temporarily 'silenced' the EBV? I don't think I want it activated again.
I would not wish Coronavirus on anybody. It was deeply unpleasant. Good to hear you have made a full recovery.
I have never had a MS relapse, but I do feel more fatigue since my RRMS diagnosis. During the 5 days that I had the virus, my main symptoms were incredibly painful head pain and fatigue. A drug combo of paracetamol and ibuprofen helped to eased some of the aches and pains. Ice packs on my head were the only remedy that eased the pain. I slept on and off for two days.
Thankfully I did not need to ask for any further medical assistance, and just sucked it up and got through it.
Please direct me to information about AHSCT for someone with smouldering MS? I know the NHS do not offer it. I am considering it privately. Like the effects of covid, I want to reduce the effects of MS.
Hi, prof G. You mentioned pwMS on immunosuppressive therapies, this should get your fifth shot. Is Kesimpta considered this type of therapy? Thanks, Tatyana
Glad to hear you’re feeling better, Prof G. Covid is horrid, and I feel awful for anyone contracting it, let alone anyone with MS.
My experience is a mixed bag: I haven’t contracted Covid yet and have had a vaccination with multiple boosters, but I also haven’t been on any DMT for over 2 1/2 years because my neurologist was afraid of my losing virus protection. My immune system has been fully reconstituted for a while now, and my disability has progressed—much more due to multiple UTIs, but also because of no DMT to mitigate damage. It’s horribly difficult to make decisions about all these things sometimes. But it probably wouldn’t be as difficult if my disease wasn’t so progressed… it would leave me more wiggle room if I didn’t choose correctly. Now everything has to be extremely carefully thought out, and I have to be prepared to accept very difficult decisions with heavy consequences. I don’t know if it will do much at this point, but I am supposed to start Mavenclad soon. I just wish the CHARIOT trial had completed already, as it would be really helpful to have that information available before I start the cladribine.
I really appreciate and understand the concerns of pwMS about Covid and getting the best protection. I never understood the problems with acceptance of medications and therapies from one country to the next when the scientific community is worldwide, and science is universal. You would think it would be a better world if we all worked to help each other. It seems like most do, so maybe it’s just the bureaucracies that make it so difficult. Hopefully we’ll get a better chance at things with some of the researchers using quantum computers and AI to comb through billions and trillions of bits of data to find new solutions, and stay ahead of the viruses.
Just one other thought… as far as EBV and MS. I have also read that herpes zoster virus has been implicated as well. Maybe it could possibly be different viruses for different people that hide in the nervous system and cause MS due to other ancillary factors.
Professor G, first, I’m so happy to hear you’re feeling better. Thank goodness! I have thus far been a recluse and a persistent masker, so I’ve managed to avoid Covid thus far. My neurologist would like to try a trial with an immune suppressant for six months due to increasing cognitive issues, and recommends the zoster vaccine first, though I’m in the middle of (yet another) outbreak so I must delay it. She also recommends skipping my second booster unless one is specific for a variant. Have you or anyone heard of this tact? Be well, all!
Hi although not confirmed I am sure I had covid in the beginning before it was flagged up. At the time I was thinking virus pointless going to the drs, cough was horrendous!! I was putting vick up my nostrils to help breathe at night. I can honestly say at no point did covid impact my MS. I opted for the jab AstraZeneca which did impact my Ms stabbing pains down my spine weird! Then Ms symptoms which I haven't suffered from in the last 10yrs. I gave it the benefit of the doubt and had the 2nd AstraZeneca jab. It started again stabbing pains yet again down my spine! Ect. That put an end to me considering any more jabs, I am out and about 24/7 public transport getting on with my life. I haven't contracted covid since, one thing I am curious about trials for statins what was the outcome in people with Ms? Annette
I'm really curious as to why Evusheld is not being used by NHS and likes of Ireland. Surely in groups not responding to vaccination, Evusheld - even when loosing its effectiveness with the most recent Omicron strain - is still far more effective than failed vaccines. The reason I ask is that I was living in Germany for a while, had 5 vaccines as of March, all of which were shown in blood tests to have totally failed due to me being on Ocrevus. Evusheld is now being used over there for many people like me but months on Ireland is still debating if it's cost effective. I just would love to understand why there is such reluctance in UK and Ireland to use it. I still keep in touch with my German consultant and they are seeing much better levels of protection and recovery in people like me who have needed it.
Hi Prof,
Glad to hear you are recovering from Covid. I'm on Gilenya & I have failed to build a response to any of the Covid vaccine shots received todate. Having have taken all of the Covid shots offered tome todate, I did get very ill on two separate occasions after receiving my Covid shot - I'm now questioning the merit for someone like myself taking the fifth shot ? I'm afraid of getting ill again if I take the fifth shot & if I'm highly unlikely to develop a response, is there any benefit ? I got Covid twice in 2021, thankfully I was not very ill on both occasions .
Thank you Prof G, I’m glad you are on the mend and back into exercise. I have been able to avoid infection so far but my partner who is not a pwMS does have long covid after an asymptomatic infection in January. He doesn’t have cog-fog or fatigue but does have all the gastric/ibs/acid symptoms, alongside random moments of breathlessness (that isn’t remedied by inhaler he was given), random changes to pulse, temperature regulation and most annoying for him - exercise intolerance which increases all the symptoms significantly for several days after. PPI’s are not impacting. Hopefully it’s just a case of time?!!
Being prone to EBV-reactivations (and hence familiar with the symptoms) myself, I strongly believe the symptoms now ascribed to 'long covid' could be due to EBV-reactivation.
It's no secret that infections (with strong immune response) are a trigger for EBV-reactivations.
There are some papers that notice evidence of recent EBV-reactivation in long covid-cases.
I feel there's more merit to study the phenomenon of post-viral EBV-reactivation as a cause of post-viral asthenia, and treat what is called 'long covid' as a subtype of this, rather than to be fixated on 'long covid' as such.
I heard this while going through my first COVID-19 episode myself. I also had a successful HSCT in March this year. As part of my post HSCT prophylactic treatment I'm using an antiviral Acyclovir but I am not sure that is specific enough against corona virus. I am curious about what you say about long-covid and the possibility of triggering EBV. Do you know if there are any signs/symptoms to look for, or is it only a CSF sample that can test this? I guess the HSCT temporarily 'silenced' the EBV? I don't think I want it activated again.
I would not wish Coronavirus on anybody. It was deeply unpleasant. Good to hear you have made a full recovery.
I have never had a MS relapse, but I do feel more fatigue since my RRMS diagnosis. During the 5 days that I had the virus, my main symptoms were incredibly painful head pain and fatigue. A drug combo of paracetamol and ibuprofen helped to eased some of the aches and pains. Ice packs on my head were the only remedy that eased the pain. I slept on and off for two days.
Thankfully I did not need to ask for any further medical assistance, and just sucked it up and got through it.
Glad to hear that you’re feeling better! I’m sharing this with some of my non MS friends so they can have a better understanding . Thanks Prof. G!
Please direct me to information about AHSCT for someone with smouldering MS? I know the NHS do not offer it. I am considering it privately. Like the effects of covid, I want to reduce the effects of MS.
If I’m on a DMT, should I have a fifth anti-Covid shot? Thanks
Hi, prof G. You mentioned pwMS on immunosuppressive therapies, this should get your fifth shot. Is Kesimpta considered this type of therapy? Thanks, Tatyana