High risk or not with cerebral vasculitis and the virus

[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?

[May7]

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 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 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.

[PMRpro]

Hypertension alone puts him in the high risk category.

[vivdunstan Volunteer]

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 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 Volunteer 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 in reply to vivdunstan]

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

[vivdunstan Volunteer 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 Volunteer]

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.

[Chipper03 in reply to vivdunstan]

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 Volunteer 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!

[Chipper03 in reply to vivdunstan]

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

[Suzym2u Moderator Vasculitis UK]

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/...

[Simmonds797]

This is all very helpful. Thank you