High risk or not with cerebral vasculitis an... - Vasculitis UK

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High risk or not with cerebral vasculitis and the virus

Simmonds797
Simmonds797

Hi my husband had cerebral vasculitis nearly 7 years ago. He has not been on any drugs for a few years now, but did start getting seizures about 2 years ago. He is on meds for high blood pressure and seizures. Would he be in the high risk category now?

15 Replies
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The NHS is categorizing everyone who is high risk, and writing to them personally next week with bespoke instructions.

I have logged onto my own record on SystmOnline and seen that I am High Risk of complications from the virus. (I have chronic lung and kidney damage amongst other things from Vasculitis, and like most with this am immunosuppressed. ) I would think that your husband will hear from them soon.

Best of luck.

Simmonds797
Simmonds797
in reply to May7

Thank you for your response.

How do you do the check you have done?

Good luck to everyone out there who is at high risk, my prayers are with you all.

May7
May7
in reply to Simmonds797

I am already signed up to SystmOnline to order regular meds online, and (under normal circumstances) book doctor appointments. If you aren't signed up to this you will have to wait until next week to hear from them. Hopefully shouldn't be long.They don't want people ringing up in the meantime, so have to be patient. I am off out now, to the countryside to enjoy nature and fresh air.

May.

Hypertension alone puts him in the high risk category.

vivdunstan
vivdunstanAdministrator

There are two categories of increased risk.

Your husband would come under the first one based on his neurological disease.

However because he is not currently immunosuppressed he probably doesn’t come under the separate higher level risk group, which is being contacted directly with more advice next week.

For more advice on the two risk groups, and social distancing measures, see

gov.uk/government/publicati...

lismacb
lismacb
in reply to vivdunstan

Hi. Along with many people here I am a little confused about whether I would be considered high risk and should be isolating for the 12 weeks. I have MPA which is being treated with Rituximab (last dose November), prednisone 5mg and have stage 4 CKD. I’m fortunate enough to still be able to work full time but in a factory where I can’t work from home. My employer is not being the most helpful and I’m worried about whether I should be at work or not. Any advice gratefully received.

Regards, Lisa.

vivdunstan
vivdunstanAdministrator
in reply to lismacb

Hi Lisa,

Have a look at this British Society for Rheumatology page which may help you figure it out. I think with 5mg steroids and Rituximab you probably do fall under the 12 week rule I'm afraid. If you haven't heard from the NHS by Sunday 29th please contact your consultant or GP (e.g. on Monday or ASAP) to clarify.

rheumatology.org.uk/News-Po...

Best wishes.

Viv

lismacb
lismacb
in reply to vivdunstan

Thank you Viv. Looks that way. I’ll lock down and wait for the letter. Stay well, Lisa.

vivdunstan
vivdunstanAdministrator
in reply to lismacb

And here is the set of guidelines issued to GPs to try to figure out the folks for shielding.

england.nhs.uk/coronavirus/...

Those are the English guidelines but I'm expecting the other UK countries are following similar protocols.

vivdunstan
vivdunstanAdministrator

More guidelines published by the UK government re the highest risk group due to get letters from the NHS (in England, Scotland etc.) this coming week.

gov.uk/government/publicati...

This is the highest risk group in vulnerability terms that I mentioned above, and will include many immunosuppressed patients.

Hi vivdunstan. Thanks for the link to the govt guidelines. I’ve just had a read and notice it mentions NHS England but not NHS Wales where I live. Your post mentions the other parts of the UK but I just want to check, do you know if they’ll contact Welsh patients? Thanks

vivdunstan
vivdunstanAdministrator
in reply to Chipper03

I don't know for definite, sadly. I know that Scottish patients are being included. I'm in Scotland. I haven't heard definitive stuff from Wales yet though. I'd expect they should be though, because the 4 nations have been working together in other ways re this. Good luck!

Thanks! And to you, all the best through this!

Suzym2u
Suzym2uModerator

This was published on March 16th by NHS Rheumatology

Clinical guide for the management of rheumatology patients during the coronavirus pandemic

england.nhs.uk/coronavirus/...

This is all very helpful. Thank you

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