I am beginning my Kesimpta treatment and ensuring my vaccinations are up to date. I contacted my GP re pneumonia and shingles jabs and asked for an RSV jab too. After some checking they have agreed to administer it. So I have a merry Christmas ahead of me being injected. It wasn’t one of the 4 vaccines listed by my MS team on their GP letter. But the MS nurse agreed there would be no harm in asking. My neurologist is based at the Southampton hospital and the GP is in Salisbury.
It is a new vaccine, and studies have not yet been done on the immunocompromised group. This is why the NHS is not recommending it and only targeting vulnerable groups where there is an evidence base.
67 yr old psMS, no DMT, considering Siponimod. Had Covid, flu and shingles vaccine. Now in London and had winter vomiting bug 5 weeks ago. My partner was about 3 days ahead of me, nasty MS exacerbation for me. Seems to be the fourth nasty bug accompanying the other 3 this winter. I will seek out the RSV vaccine.
I had covid and flu vaccines in October. My husband didnt. He became ill in mid November. We have hepa filters in the house & use nasal sprays when in cafés. However he infected me around late November after a visit by train to London and a restaurant visit.
He was laid out for a week and took a further 2 weeks to recover. I was very ill and weak for 3 weeks. I developed a secondary respiratory infection and was on antibiotics for a week. We took 5 lateral flow tests for Covid and they were all negative. We therefore presumed it might be RSV.
I'm still weak & sleeping a lot. I stopped Ocrevus in Feb 22 after I caught Covid having second half of first infusion and my hospital didn't have tympanic thermometers and imsisted I removed mask every 30 mins over the 5 hour infusion. I developed severe Covid and then had Paxlovid rebound for 5 weeks. I was then Hospitalised for antibody infusion and antibiotics for secondary infection.
It made me realise how little protection I had on Ocrevus. So I have switched to Mavenclad and start Y2 in January.
I do believe the theory that Covid infections reduce our immune response to other illnesses. The whole country seems to fall ill more easily and for longer.
Yet health authorities still refuse to install hepa filters in hospitals and schools. Norovirus used to last 48 hours. I know several people who have had symptoms for over 10 days.
I do think that if you are deemed more vulnerable and encouraged to get Flu and COVID vaccines (and shingles), then you should get the RSV one, what's the difference after all? I would like it, with Asthma, MS and treated for cancer, I am at risk, so why not give me some protection? A&E's are overwhelmed, I was there last weekend with breathing problems and was told it would be hours before I saw a doctor! Asthma can kill in 30 mins so this was a very unsafe place to be.
I think my partner who is 74 got the RSV in Scotland. During the Pandemic we were both in the same category due to our differing risks, so why aren't we now? It doesn't make sense. Is it down to money or supply of the vaccine? Did the government order only a limited supply of the RSV vaccines, many months ago ? So there is not enough vaccine for all the vulnerable groups, just asking
I was diagnosed with RRMS in 2007 and held off taking a DMT until 2023. I had my second (final) round of Cladribine last April. I have been monitored by blood test under my Neurologist but (unlike the first round) my lymphocyte count has not got over 0.3 since. I have been asked by my GP several times to have the annual Covid and Flu vaccination this Winter (I did last year and want to this year). I asked for advice (multiple times) via every HCP route i have available to me (My MS Nurse, Hospital MS Nurse, MS Plebologist Nurse) but no-one has got back to me if this is safe or not to take the vaccines. All want to get advice from my Neurologist before advising. My next blood test (which is a 3 hour round trip into London) is in February. I have decided not to risk taking the vaccine. Is this the best course? Despite low immunity since April I have managed to avoid illness.
We always recommend that pwMS have the seasonal vaccines. I am not sure if there are any additional risks for pwMS choosing to take these vaccines. Which ones are you concerned about?
I'm a pwMS, in Ocrevus since 2021. My doctor says that I must take covid shots only after 5 months after each infusion. However, in the last 2 infusions, there were no vaccines available when I had this one month window (I had 5 shots previously, but no one in the last year). Should I take my shots even after less then the 5 months? My last infusion was in the beginning of December, 2024.
I never had Covid-19. Diagnosed with MS in 2012 (first symptoms in 2004), secondary progressive (since 2019), with disabilities in my right leg (use a cane to walk). Thanks.
I would take your shots when they become available. There is no evidence that humoral or antibody responses are better at 5 months last infusion versus any other time. At 5 months, you are as likely to be B-cell depleted as at 1 month. In addition, when you have the next ocrelizumab infusion, you take out all the memory B-cells anyway.
I am pretty careful about wearing an n95 any time I am in an indoor location that isn't my own home. It does seem to help -- the only time I got sick, I had just been to the neurologist's office, which no longer required masking and had many coughing patients and staff.
Masking has become weirdly political, but I don't find it a bother. When I knew I could be undergoing IRT, I bought a case of masks. I also get all the vaccinations I'm eligible for.
I am beginning my Kesimpta treatment and ensuring my vaccinations are up to date. I contacted my GP re pneumonia and shingles jabs and asked for an RSV jab too. After some checking they have agreed to administer it. So I have a merry Christmas ahead of me being injected. It wasn’t one of the 4 vaccines listed by my MS team on their GP letter. But the MS nurse agreed there would be no harm in asking. My neurologist is based at the Southampton hospital and the GP is in Salisbury.
The 4 vaccines on the form were flu, Covid, pneumonia and shingles. Wondering why RSV hasn’t been added if it’s so prevalent.
It is a new vaccine, and studies have not yet been done on the immunocompromised group. This is why the NHS is not recommending it and only targeting vulnerable groups where there is an evidence base.
That’s helpful - thanks
However, acknowledging the lack of evidence, the CDC recommends it for immunocompromised patients.
67 yr old psMS, no DMT, considering Siponimod. Had Covid, flu and shingles vaccine. Now in London and had winter vomiting bug 5 weeks ago. My partner was about 3 days ahead of me, nasty MS exacerbation for me. Seems to be the fourth nasty bug accompanying the other 3 this winter. I will seek out the RSV vaccine.
I had covid and flu vaccines in October. My husband didnt. He became ill in mid November. We have hepa filters in the house & use nasal sprays when in cafés. However he infected me around late November after a visit by train to London and a restaurant visit.
He was laid out for a week and took a further 2 weeks to recover. I was very ill and weak for 3 weeks. I developed a secondary respiratory infection and was on antibiotics for a week. We took 5 lateral flow tests for Covid and they were all negative. We therefore presumed it might be RSV.
I'm still weak & sleeping a lot. I stopped Ocrevus in Feb 22 after I caught Covid having second half of first infusion and my hospital didn't have tympanic thermometers and imsisted I removed mask every 30 mins over the 5 hour infusion. I developed severe Covid and then had Paxlovid rebound for 5 weeks. I was then Hospitalised for antibody infusion and antibiotics for secondary infection.
It made me realise how little protection I had on Ocrevus. So I have switched to Mavenclad and start Y2 in January.
I do believe the theory that Covid infections reduce our immune response to other illnesses. The whole country seems to fall ill more easily and for longer.
Yet health authorities still refuse to install hepa filters in hospitals and schools. Norovirus used to last 48 hours. I know several people who have had symptoms for over 10 days.
It is concerning.
I have had a heavy cold for the last two weeks including 2 days in bed but nothing rèaly serious. I do not receive any DMT
I do think that if you are deemed more vulnerable and encouraged to get Flu and COVID vaccines (and shingles), then you should get the RSV one, what's the difference after all? I would like it, with Asthma, MS and treated for cancer, I am at risk, so why not give me some protection? A&E's are overwhelmed, I was there last weekend with breathing problems and was told it would be hours before I saw a doctor! Asthma can kill in 30 mins so this was a very unsafe place to be.
I think my partner who is 74 got the RSV in Scotland. During the Pandemic we were both in the same category due to our differing risks, so why aren't we now? It doesn't make sense. Is it down to money or supply of the vaccine? Did the government order only a limited supply of the RSV vaccines, many months ago ? So there is not enough vaccine for all the vulnerable groups, just asking
Not sure about the economics, but it is likely a significant factor in their calculations.
I was diagnosed with RRMS in 2007 and held off taking a DMT until 2023. I had my second (final) round of Cladribine last April. I have been monitored by blood test under my Neurologist but (unlike the first round) my lymphocyte count has not got over 0.3 since. I have been asked by my GP several times to have the annual Covid and Flu vaccination this Winter (I did last year and want to this year). I asked for advice (multiple times) via every HCP route i have available to me (My MS Nurse, Hospital MS Nurse, MS Plebologist Nurse) but no-one has got back to me if this is safe or not to take the vaccines. All want to get advice from my Neurologist before advising. My next blood test (which is a 3 hour round trip into London) is in February. I have decided not to risk taking the vaccine. Is this the best course? Despite low immunity since April I have managed to avoid illness.
We always recommend that pwMS have the seasonal vaccines. I am not sure if there are any additional risks for pwMS choosing to take these vaccines. Which ones are you concerned about?
I'm a pwMS, in Ocrevus since 2021. My doctor says that I must take covid shots only after 5 months after each infusion. However, in the last 2 infusions, there were no vaccines available when I had this one month window (I had 5 shots previously, but no one in the last year). Should I take my shots even after less then the 5 months? My last infusion was in the beginning of December, 2024.
I never had Covid-19. Diagnosed with MS in 2012 (first symptoms in 2004), secondary progressive (since 2019), with disabilities in my right leg (use a cane to walk). Thanks.
I would take your shots when they become available. There is no evidence that humoral or antibody responses are better at 5 months last infusion versus any other time. At 5 months, you are as likely to be B-cell depleted as at 1 month. In addition, when you have the next ocrelizumab infusion, you take out all the memory B-cells anyway.
Please see: https://gavingiovannoni.substack.com/p/q-and-a-52-timing-of-your-annual
I am pretty careful about wearing an n95 any time I am in an indoor location that isn't my own home. It does seem to help -- the only time I got sick, I had just been to the neurologist's office, which no longer required masking and had many coughing patients and staff.
Masking has become weirdly political, but I don't find it a bother. When I knew I could be undergoing IRT, I bought a case of masks. I also get all the vaccinations I'm eligible for.