Highly vulnerable list?

[AnniesRyder5]

3 weeks ago I was diagnosed as having PMAR

Since then my quality of life has been transformed by steroids

But am I supposed to be included in the vulnerable list?

Thank you

[Hidden]

Hi AnnieRyder5, welcome. I am glad you are feeling better but remember to take it steady. Pred isn't a cure it just gets rid of the inflammation that causes pain and stiffness until PMR burns itself out.

You are most likely in a vulnerable group if you are 15mg or above in the next week. You do have an autoimmune condition and pred is suppressing your immune system. But whether you are at high risk depends on other factors too. Please read the flow chart on this link. It looks complex but it isn't if you follow the flow! Bear in mind that in some cases higher risk in this chart does not always map onto shielded/extremely vulnerable.

healthunlocked.com/pmrgcauk...

Could you give us more information in your profile so we can help more.🌻

[Hidden in reply to Hidden]

Here's the video version....

healthunlocked.com/pmrgcauk...

[AnniesRyder5 in reply to Hidden]

Thank you and I’ve updated my profile

[Hidden in reply to AnniesRyder5]

Thanks. Don't forget to isolate as much as possible!

[Portobello in reply to Hidden]

Hi- this is my experience: registered on govt site, no letter. Emailed GP. I am "at risk" but not "high risk". This is contrary to Rheumatology guidance flow chart posted here. My PMR is managed in primary care i.e. by me, GPs clueless. I'm over 70, have hypertension, lung issues from childhood and currently 8 mg Pred. So.... on my own with this. No available online slots. Still, finding ways round it 🙂 Have now isolated for a month

[Hidden in reply to Portobello]

Yes I think there is a gap in the overlap of the extremely vulnerable that initiates shielding and high risk that indicates isolation.

The online registration is assessed against the original list from GPs etc about the fact that if you get covid19 then your chances of being hospitalised are increased significantly based in the existing evidence from around the world. Therefore, if you aren't on the list of shielded (yet), you may still get assessed later. I haven't seen the latest figures on how far they have gone through the list yet.

The problem is there is a lack of clarity and transparency about the process. The decision makers seem to be making their initial decision based on multiple illnesses that render you at more risk. So I have PMR, diabetes, hypertension and am on 7.5mg of pred and a dmard off the list. I got a text saying shield by lunchtime on day1. Others have letters from drs saying they are vulnerable but whether this has gone through the system yet is an unknowable thing at the moment!

I got a phone call from social services as I live alone. It may be worthwhile, if you have no one to go to the shops and pharmacy, contacting them to say you need help. You can only ask. I hope you get some resolution.

[PMRpro Ambassador in reply to Portobello]

You are at increased risk because of PMR itself - but not only the being on above 5mg long term but also the hypertension and age have to be added - and that takes you to high risk - not necessarily of catching the virus, that doesn't appear to be difficult anyway, but it is the increased risk you would be at in terms of medical care required if you did.

Truly clueless GPs ...