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vixen
3 weeks ago

Hello @collettepage. I may be wrong, but…..in the beginning, we were all lumped in the Vulnerable category. Then that divided into Highly Vulnerable and Clinically Vulnerable which is pretty much where we are positioned. To add to the confusion, some Local Authorities have slightly different criteria. Also, some DMDs are higher/lower risk. It’s all a bit confusing! The best bet would be to ask your MS nurse or better still, check with your GP. Sorry that’s not a great help!


colettepage
3 weeks ago

@vixen, thanks. I know it’s all as clear as mud! I’ve pretty much chose to shield myself to a certain degree. I’m not on any meds & although being considered for Ocrelizumab that’s been halted for now. Colette x


sonnnsonnn
3 weeks ago

Hey I work for the community hub and we currently advise people to call the number on the government website, but the best bet would definitely be your GP.
Hope this helps!!


watsoncraig
3 weeks ago

@colettepage you should watch and read what @dominics has posted. I have PPMS and have not been told to shield and am on Ocrevus. It’s more to do with any underlying conditions not the MS


vixen
3 weeks ago

Also @watsoncraig and @collettepage, my sister has PPMS and had an Ocrevus infusion just before lockdown. She wasn’t advised she was highly vulnerable. Then she got the letter a month later. Oddly, whilst in solation with her family, she was the only on of four who got Covid! She was poorly but not to the point of hospitalisation and has recovered now. Weird old business…..


itsmewithms
3 weeks ago

Hi- my first full infusion of Ocrevus went on as scheduled in mid-April although my Neuro said I could wait one month if I wanted. I did not wait as I thought conditions would likely worsen in my area before they got better. I was right as they seem to be peaking about now.

Your risk, as stated above, may come from other health conditions/morbidities than MS itself. And, my Neuro reminded me, Ocrevus depletes the B cells while the T Cells are associated with immunity. He thinks even as vaccines are developed they will still be effective for people on O. He did advise me to take every care not to contract it but I would say that holds true for everyone. In the work tracking C-19 and recovery they found that with patients on O in Italy that they did not have the over reactive immune response that is a very dangerous phase of C-19 recovery. So perhaps it helped-

This is what Dr B says about O and C-19 https://www.youtube.com/watch?v=eo_e-d2tJeg&list=PL3a4GpjWLtCgf_fE-lLMHkBsIuBhiNh4Y&index=2&t=0s

That said I am still taking every precaution to avoid as I urge all to if you can. Not sure the date on the Dr G presentation that you saw.


dominics
3 weeks ago

@colettepage I think, and it is definitely worth revisiting if in doubt, that if you do not have any comorbidities (other health conditions) that you don’t need to shield.

Prof G is very clear that having MS alone does not make you additionally vulnerable;e to catching Covid19.

Apart from certain MS drugs or treatment scenarios (1-year post HSCT for example) the evidence now is that the vast majority of DMTs do not increase the chances that should you catch Covid19 you will have a worse outcome as a result of the DMT you may be on.

There is a pretty strong hypothesis that being on an immunosuppressant/immunomodulator may actually help to mitigate the effects of a Covid19 infection. Though a trial in Germany with very high – much greater doses that used in MS – dose beta interferon did no help or harm. Possibly pointing to the fact that it is not considered that effective or useful in MS these days!

We can’t keep our heads below the parapet forever. I am 26y in and on ocrelizumab. I try to live as normal a l;wife as possible but now I wear a mask when I am out, always socially distance myself from anyone whom I don’t know to have followed good practise for at least 6 weeks. I won’t see my neighbour – a GP =- even though she gets tests three times a week. Too risky. I wear gloves and carry alcohol sterilising solution for when I am done shopping or whatever.

The virus is stopped in its tracks by distancing and killed with cleanliness. It doesn’t just inhabit the air as a diseased miasma. You and those around you need to be careless with the rules and hygiene to catch it. as it needs proximity, time and to be transferred to your mucous membranes.

I am not trying to scare you outside 😉 Far from it, just trying to put some perspective into the worry that is not opinion but science based.

All bets are off if someone has other conditions like heart disease, obesity, diabetes, respiratory issues and the like. I remark only from the perspective of someone who just has MS and may or may not be on a DMT.

Best of luck. Hope this helps.

bit.ly/CovidMS is also a good watch.


dominics
3 weeks ago

I am otherwise pretty fit and well am going in for my 4th scheduled full Ocrevus infusion in a fortnight. All my bloods have come back fine as of yesterday.


colettepage
3 weeks ago

Hi @dominics, thanks, very helpful. I do have a comorbidity of obesity so I’m shielding to a degree not going out etc. Thanks to everyone who takes the time to respond to posts, really appreciated, take care & stay safe.


dominics
2 weeks ago

@colettepage – I am not asking for figures 😉

Just fyi The risk of a worse outcome if infected with the virus are worse the more obese one is. Just nudging past a BMI of 25 means you are technically – by that I mean by medical definition – obese. A BMI over 30 means – technically again – that one is morbidly obese. Overall, virus aside, being obese has greater long term health risks and is something to address. I appreciate the effort involved and that it is no easy task, I was a v big boy in the past with a BMI of 29.5. These days am a comfortable 22.5 but can get as low as 21, though it is a v dull way to live.

Bear in mind that the BMI calculations do not account for the extremes in the dataset. A 6’3″ tall 18.5 stone rower who is all muscle will show as obese even though they are all mu78scle and very fit.


dominics
2 weeks ago

The risks by BMI for a Copvid 19 infection are broken out, quite readable, here:

https://www.icnarc.org/Our-Audit/Audits/Cmp/Reports

download the report. by the link on the right


colettepage
1 week ago

Thanks @dominics


louised
1 week ago

Hi , it’s my first post. I was diagnosed in October 2019 and after a short course of steroids started Tysabri & been having my infusions every 28 days. I am a nurse and was given a letter when I had my March infusion advising me to shield for 12 weeks. I have none of the listed co- morbidities. My OH dept also requested that I work from home , but in reality that’s not really possible as a nurse so I’ve been at home with very little work to do. I have not had my May infusion as our unit put everyone down to 8 weekly during the pandemic, to reduce exposure to hospital environment and a lot of the nursing staff were re- deployed back to wards. Personally, having read all the papers and advice from DH/WHO and MS charity don’t think that I need to shield , but work have been very cautious and don’t want to take the risk. I work in nephrology.Hope to be getting back to work in the next few weeks once extended lock down is finished. Meeting next week to discuss – hope this has helped . Take care


colettepage
1 week ago

Yes, @louised, I know a few nurses who’s employers have been cautious and had them not in the clinical setting. Take care x


louised
1 week ago

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