Last reply 4 months ago
Am I “vulnerable” if not on MS meds???

Just read the following document on Gov.uk website following something someone mentioned on this forum:

https://www.gov.uk/government/publications/covid-19-guidance-on-social-distancing-and-for-vulnerable-people/guidance-on-social-distancing-for-everyone-in-the-uk-and-protecting-older-people-and-vulnerable-adults
Published 16 March 2020

It DOES specify people with MS in the “vulnerable” category.

I am newly diagnosed and was supposed to be starting Ocrevus as soon as possible- obviously now assuming this will be postponed.

Had LP last week but I am not taking any other MS drugs at all – do you think that I should still consider myself in the “vulnerable” category???

I don’t work and we live in a rural area. My current MS symptoms mild and I was going to offer my help and support to local villagers during crisis but wondering now if I should just stay away?

Any thoughts?

Jo

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highlander
4 months ago

@jojok
Morning as your not taking any Meds that can lower your blood count, I’d guess you are just as vulnerable as everyone else….
But if you do get it, it will make your existing symptoms worse…
So I’d play it safe if I were you.
Better safe than sorry..


jojok
4 months ago

Thanks for your advice @highlander

Think I’m going to ramp up the isolation measures after all. If I’m going to be delaying my Ocrevus I don’t want anything else to make any future relapses etc worse.

LOVE Shift.ms !!! Where else would we find so many people in similar positions who just ‘get it’.

Xx


highlander
4 months ago

@jojok
As for you having your Ocrevus infusion I’d follow the advice from your nuero, it’s a bit of a double edged sword in the current climate but ultimately your decision I’m afraid.
Happy trails…


pippa87
4 months ago

I’m on ocrevus and Iv been thinking just about fighting the virus with a slightly lowered immune system that I completely forgot about a higher risk of a relapse of we get poorly. Even on treatment when I’m run down it flares my old symptoms back up, so with a new virus god knows how our nervous systems will react. I’m now being extra careful as I don’t want to go through a major relapse again!


watsoncraig
4 months ago

You are vulnerable.
Got a letter yesterday from MS clinic to say I am not only vulnerable due to MS but also immunosuppressed due to being on Ocrevus, the letter was dated 14 March and I knew everything it contained.
You do fall into the vulnerable group


phill_mogridge
4 months ago

I’ve wondered this also for myself, I finished my second round of Lemtrada in Aug 2017 so my immune system should have built back up now and am no longer on medication.

However from the guidelines they mention technically it looks as if anyone with MS should be in the isolation for 7-14 day category and so my work has sent me off because of that.

I think it is a bit overkill personally for those who aren’t on any meds at the moment, as I’m perfectly healthy, had no symptoms of MS since 2016 or Corona but I think its more of the fact that it’s a bit of an unknown at the moment, should you catch it.

I think in your case if waiting for the meds, you don’t want to risk catching Corona in case this delays them getting the MS meds to you sooner than what they usually would, but suppose you’ll need to talk to your neuro team to be sure.


vixen
4 months ago

Essentially @jojok, MS itself doesn’t make us more vulnerable, but associated symptoms do. People taking DMDs are more vulnerable to varying degrees. Don’t write off Ocrevus until you’ve met with your consultant. Advice about Ocrevus has been changing over the past two weeks now. Officially, now, people on Ocrevus contracting the virus are at ‘moderate’ risk of more serious infection. However, we know from the news that others on Ocrevus with the infection only had mild symptoms and are recovering well.

You should aim not to expose yourself unnecessarily. As always, don’t take risks. Eat healthy, exercise, stay positive. I reckon that with more people isolating at home, Shift is gonna get really busy! 🙂


itsmewithms
4 months ago

Dr Boster just had a live stream last night and much of it focused on Covid 19, of course. He has also put out segments on it that may be helpful.

I am due for my first full infusion April 15th and am trying to stay safe so I can take it…I am supposed to check in with my Neuro this week if I want to go ahead. He said I could or could wait a month if I want. There is a possibility of “crap gap” issues where the benefits start to wear off or symptoms crop up but it seems like if you were at a higher BMI that is a greater risk and I am a “smaller” person being only 5’2″.

He has lots of helpful videos- here are two that related to MS and Covid 19


itsmewithms
4 months ago

You don’t need to watch the same thing twice ;-0 although I did to grasp it all…this is the second one I meant to paste https://www.youtube.com/watch?v=b0UtZRPeOO0&list=PL3a4GpjWLtCgf_fE-lLMHkBsIuBhiNh4Y&index=5


jojok
4 months ago

Thank you all for your really helpful and supportive posts.

I’m battening down the hatches as of now.

I’ll speak with my neurologist about starting Ocrevus and see what he thinks. Part of me just doesn’t want to travel into central London (Charing Cross Hospital) to get it done when I live in rural Wiltshire!

Xx


dominics
4 months ago

@jojok – of the neurologist feels that in your circumstances that the benefits outweigh the risks then they’ll want to start you.

Traveling into London: of not in your car then wear gloves, DO NOT touch your face. Of you have an itch then take the gloves off and scratch. User name sanitizer of you have it. Beg some from the hospital when you are there;)

You’d be shocked at how much we all do it. Wash your hands, wash your hands

There is a growing body of reports about MS patients on Ocrelizumab that have Covid-19 and are doing no worse as a result.

If you are on the middle of a relapse them you could be more vulnerable to the effects of the infection. You are not more likely to catch it because of MS. You’ll catch it because of the behaviour of others or yourself has transmitted the virus to you.

I am on it too so am keeping an eagle eye on reports. Am greatly relieved by the advice and the reports.

The hashtag #MSCOVID19 is being used to track the discussion. Anyone can see it.


jojok
4 months ago

@dominics You’re now my guru…! Thank you. 🙏🏻


dominics
4 months ago

@jojok beware of gurus. See my post about latest ABN advice a few sec ago. Relevant.

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