Barts-MS rose-tinted-odometer: ★★★★★
Thank you for the feedback on my rough-and-ready decision aid. It is clear there is a need for it. I have spent a bit of time adding DMT-specific pages to the aid and added sections on ‘Which vaccine?’ and ‘Pregnancy’. I have also added a page with useful links. I have also set the sound to be on-demand rather than being automatic; so you need to click on the icon if you want to hear me talk to the question or topic on a specific slide.
Please note this is still a beta version, albeit version 2.0, using the Google Slide’s technology as an easy-to-use platform for prototyping. I will continue to update the decision aid as questions come in. The survey results are quite telling in that you prefer a text document in a downloadable format and a web application. Now I need a grant to be able to pay our ClinicSpeak design team to make this beautiful and more user-friendly.
Your feedback is very much appreciated so keep the comments coming in. Thanks.
CoI: multiple
Twitter: @gavinGiovannoni Medium: @gavin_24211
Someone I had an interaction with on Twitter today said they had spoken to their GP and the GP had suggested that some PwMS may not have any priority for the vaccine. I thought we are all in category 4 or 6 (unless old enough to fall into an age-related category).
Is this the case? How do they decide who falls into what category? I don’t need any help making a decision, I just need an appointment!
We have classed all our patients about to start on a DMT, who may need to switch to an immunosuppressive therapy in the near future, who may need steroids to treat a relapse in the near future or are already on an immunosuppressive therapy already as vulnerable hence the need for them to be vaccinated ASAP.
I’m on DMF. Not immunosuppressive so does that mean I’m not priority? And is it up to the hospital (I’m at Queen Square) or the GP? My GP only recently offered me the flu jab I already had in November, so I don’t hold out much hope.
What happens if you have a relapse and need steroids and you then need to be escalated to ocrelizumab? If this happens you then become a high priority, but as it takes 8-16 weeks* to get the vaccine and become immune you should have the vaccine ASAP in anticipation that you may need it.
*Vaccine dose 1 + dose 2 at 4 weeks + 4 weeks for the immune response to mature = 8 weeks
*Vaccine dose 1 + dose 2 at 12 weeks + 4 weeks for the immune response to mature = 16 weeks
That is not how I read it…4 or 6 end of story
I am on fingolimod and received 2 doses of the Pfizer vaccine. I am about 1 month out from dose two. I have no detectable antibodies based on a venous draw in a commercial lab testing for anti-spike. Now what?!? 😦
Love the updates to the tool! I filled out the survey (think I did it right 🤞). I am interested in hearing more about how you are monitoring immunity post jab & what you all are observing. My interest is coming from being on ocrelizumab.
I just got my second jab (Pfizer)… your advisement along the way has really helped me not wait but to follow up with my neurologist who had indeed updated his recommendation from waiting till the most “ideal” date to get it if offered. Thank you!
I had a SC clardibine course at Barts finishing last year, which I mentioned to my GP surgery asking if this now dated immunosuppression made me vulnerable/at risk in terms of vaccination scheduling. The next day I get a phone call booking vaccinations for my primary carer giver (long-suffering spouse) and myself, both aged 49, which we had today 5 days only five days after my initial question. This was the Oxford whatnot vaccine, which would not have been my first choice. I know lots of researchers at Oxford and it still clouds my judgement – no disrespect – the place is probably full of really great folk, but they seemed to be on holiday when I have visited. Yes, I could have phoned Barts and discussed it, but they are busy doing more important things (I mean that genuinely – really impressive work – bravo!). But that’s not me, which is why with advanced MS I went for cladribine before other meds were available. I don’t do dithering (except for marking student work – sole destroying work – but what have the fish done to deserve this?) – its all or nothing, no regrets. My wife was happy with the complimentary “care-givers shot” – its bad if I get it, but more so if my carer does as there is bugger all I can do to help (and I’d never hear the end of it – quite rightly too). an endless supply of good humour only goes so far.
I know I really should read the pamphlet they gave after the vaccine but I worry it might contain the the dreaded “no alcohol” clause… The Black Pig McLaren Vale Shiraz I have open seems to be working just fine. I’ll swat that pesky virus if it tries to snaffle any of it.
Put my comments in the google form love this sent to someone here with ms who still needs convincing to get the vaccine