Shielding

[blackgolf]

Hi I was diagnosed with cerebral vasculitis 14 years ago. At that time I became quite poorly and had steroids infused every 12 weeks over 3 days. I do still take medication but have not had to have steroids for a while now. I have been told that I am stable now and I’m doing well. With this in mind I have not been shielding but wondered what your advice would be ?

[vivdunstan Volunteer]

Shielding in this case would depend on your medication. In particular any immunosuppression drugs you are taking. Normally a steroid would be needed to qualify too. What immunosuppression drugs are you on?

I am a fellow cerebral vasculitis patient, fell ill 27 years ago. But I've never gone properly into remission, so still am on a cocktail of immunosuppression drugs. I was identified via those as a shielding patient, and have been getting shielding order letters.

[blackgolf in reply to vivdunstan]

At the moment not on immunosuppressant either but have to take medication for pain/ hypersensitivity from illness plus medication for burning and also take a Parkinson’s drug to help with lethargy. Although in remission as such I’m told ! I still have lots of symptoms similar to ms which was thought to have initially.

[vivdunstan Volunteer in reply to blackgolf]

Ok if you are not immunosuppressed you would probably not be classed as requiring to shield. The key issues for shielding tend to be if immunosuppressed (at an adequate enough level) or if having sufficient lung disease. The list is quite restrictive, but based on those medical situations which put people at greatest risk - clinically extremely vulnerable - if they catch Covid.

This does not stop you deciding to shield yourself for your own safety. But it will mean you do not have access to e.g. measures put in place re working people who have to shield, priority shopping, free vitamin D etc.

Re the vaccine you would probably fall into priority group 6, given your medical history. The shielding group (clinically extremely vulnerable) falls into priority group 4. So you will be done as a priority, but a little further down the queue.

To be honest not being on immunosuppression drugs and therefore not qualifying for shielding does mean you are at a significant advantage over many vasculitis patients. This doesn't remove your risk, but makes it much lower.

Good luck!

[blackgolf in reply to vivdunstan]

Thankyou for your reply it has been helpful for me. But I was always told to avoid flu vaccine as the immune system would be affected. Are people with vasculitis allowed to have this vaccine ?

[vivdunstan Volunteer in reply to blackgolf]

Yes we are allowed, and indeed are normally advised to get it. It would be extremely unusual for a consultant to advise against having the vaccine. Normally vasculitis patients should get the flu vaccine too, especially if immunosuppressed and thus at extremely high risk.

The Vasculitis UK charity has compiled an advice page about the Covid vaccine:

vasculitis.org.uk/news/covi...

For more general vasculitis advice re vaccines see

vasculitis.org.uk/living-wi...

If in doubt you can ask your consultant for tailored advice for your specific case. But I’d be extremely surprised if they advise against the Covid vaccine for you.

[tiachibird]

I too have Vasculitis MPO since 2016 and I am seriously shielding and have been doing so since March 2020. Pleased to meet you. I live in Chadderton.

[blackgolf in reply to tiachibird]

Hi Thankyou for introduction. I am from south Staffordshire

[BB1811]

I was diagnosed with cnsv in 2008 x I have been in remission for a long time (although still get a lot of little things that many people get and the fatigue is tremendous) I have been told that I do not qualify to shield so I still have to work x

[blackgolf]

I know it’s concerning as I don’t think any of us in this category would be safe if we were to catch it ! Like yourself still have bad days pain and fatigue and wonder how our body would cope. Stay safe

[BB1811 in reply to blackgolf]

I don’t think my body would x I got pneumonia last year and that was so bad x it is very scary x keep safe x

[blackgolf in reply to BB1811]

Take care make sure you look after yourself

[AndrewT]

Dear blackgolf,

If, like me, you are 'expected' to Shield, you Will receive a - actually quite detailed- letter about this. This Letter contains both 'Mandatory Requirements' along with 'Recommendations'... not the Law but 'A Good Idea'.

If you haven't received, this information, you Probably Won't have to Shield. If you are unsure then contact, your 'Normal' Doctors/ Consultants- or your GP. Clearly, if You 'Feel'- how can I say 'Uneasy'... then Do Shield, in part anyway (Better Safe Than Sorry).

Have Faith blackgolf, this Will be Over soon.... I know that I said that last year.....

Look after yourself, my friend, and Happy New Year 2021

AndrewT

[blackgolf in reply to AndrewT]

Thankyou for your lovely response. I would also wish you all the best for 2021

Denise

[LizzieAFib]

Hi. Hope you don’t mind me asking - what were your symptoms before you were diagnosed with cerebral vasculitis? I have had microscopic polyangiitis, then in remission. Currently unwell since last October and some vasculitis blood markers, but nothing clear yet. TY