Do you live/work in the UK? Have you received your letter about risk for Covid 19? If not ...

[PMRpro]

healthunlocked.com/vasculit...

This is a link to a post on VasculitisUK about a new risk assessment page on their website for all patients who have not yet received their notification which you can use to inform employers, work colleagues , family and friends so they can have an understanding of your condition, your medication and your situation.

Unlike most links, GCA and PMR are specifically mentioned. Perhaps the most informative section is this:

Immune Suppression

There is no hard evidence at present to show that that immune suppressed patients are at greater risk of catching the virus.

However there is ample evidence that in those who are immune suppressed, if they do catch the virus, the course of the disease will be much more severe and dangerous.

I'm sure that the majority of our members will find this useful - especially if they are working and haven't had their letter yet. I hope it helps.

[Theziggy]

I have Diabetes Type 2, controlled with diet and exercise, and have Palindromic Rheumatism (similar to PMR) and received a letter from GP telling me to self isolate for 12 weeks, because of my conditions.

[Hidden in reply to Theziggy]

Diabetes is one of the hot button conditions, as is high blood pressure. Had I not "qualified" with pred and dmard, diabetes and hbp would have got me. Thats almost halfway through week 2. I obviously only count work days!😕😉

[Theziggy in reply to Hidden]

Though, if one has a one or more auto immune diseases, they should't even need a letter from the GP, they should start to self isolate from NOW!

[PMRpro Ambassador in reply to Theziggy]

Should have been self-isolating for the last 2 weeks ...

[mo3go7]

Can I just say how blessed you are that your country is giving you support like this? I'm in rural USA. I am 64, work full time & my position is essential, so still working with many precautions. I saw the risk factor chart on here & took it, I am moderate risk. I've seen nothing like that offered anywhere else but here. I can't work remotely & need the income as I'm on my own. I am in a two person office with no public access, just phone calls & paperwork. I emailed & called my rheumatologist at the onset of this in my area & he took 4 days to reply. His only advice was continue taking my prednisone as prescribed & only take Tylenol if I get the virus. No other advice. We are on a Stay at Home order here in my state, but can leave for groceries, pharmacy/DR or essential work. I've seen nothing that speaks about our risk or vulnerability per our health condition (PMR). It is all very general advice about who is at risk. If I had a letter stating I'm more at risk I think my employer would honor it. My brother took leave without pay because he was still being required to go out to other's homes for work at an essential company & has heart disease. I am always amazed at the difference in your health care vs ours & just wanted to share.

[Hidden in reply to mo3go7]

I hope you manage to get paid leave and are ok. Harsh times. Stay safe 🌻

[Thelmarina in reply to mo3go7]

That’s harsh. Bureaucracy is a pain, and having to go through this anxiety for the want of a letter from the right place is so frustrating. You can’t talk to your employer? 🌺

[Ansteynomad]

I'm on 35mg Pred now, coming down from 50ng at Christmas, so according to BSR and Vasculitis UK, I should be shielded. When I didn't get a letter, I contacted my GP, who told me the letters weren't being sent out because "things are moving so quickly". That's all very well, but I'm going to need some evidence for Occupational Health. Any ideas?

Thanks

[Hidden in reply to Ansteynomad]

I think a copy of any rheumy/Dr letters, last prescription sheet, pred, the RHEUMY link from last night .I.e ..the addenbrooks flow chart. This post with the immunology ... And try this lupus page the pmrpro circulated last week. I think if you print that with a covering letter that explain the Dr said letters may not go out as quickly as intended. There are a few other things. Some conditions they seem to understand so a letter telling them how the evidence supports your vulnerable status. Hopefully others may have some more answers...it's a while since I worked despite being 58. But when I was first ill the HR dept and OCC health were supportive. Good luck!

[PMRpro Ambassador in reply to Ansteynomad]

Did you read the post and follow the links? There is a sheet to download with the VasculitisUK logo at the top.

I quote:

"There is a new COVID19 risk assessment page on the website for those who have not received an official letter and would like to share with employers, work colleagues , family and friends. This for them to have an understanding of your condition, your medication and your situation. The page can be downloaded and printed off. It has the VUK logo at the top of the page."

[Devoid in reply to Ansteynomad]

Hi if you are in the U.K you can register yourself on the gov website, you need your nhs number and a few other details

[Hidden]

I received my letter today,i have mild Asthma but because i am taking Actemra which lowers the immune system i am at risk.Oh ha😆x

[Hidden in reply to Hidden]

Did it feel abit strange when it tells you you HAVE to stay home and isolated, and social distanced from housemates...

[Theziggy in reply to Hidden]

Yes, though isolation won't be that much different from my normal life apart from going to shops (which I might do - maybe don a mask) . It is, as you suggest, the HAVE part that brings it all home!

Stay safe folks

[PMRpro Ambassador in reply to Theziggy]

Keeping well away from everyone else is far more effective than donning a mask unless it is the properly fitted ones healthcare workers need (and haven't got!). And hand washing/sanitising. The non-effective masks may increase risks - if you aren't used to wearing one you fiddle with it, touching your face. When you take them off you risk spreading the virus (if there is any) to the rest of your head and clothes - which would need to be washed. So much easier to stay at home. I've been doing it for more than 3 weeks - but then, so has everyone else here which helps.

[Hidden in reply to Hidden]

Yes it is very weird we are so used to just going about our daily life's as we please.But as it will keep us safe then hey count me in.Bought lots of jig saws to keep mind active,and the one thing i am so grateful for is the garden, 🌻⚘🍃 can potter about weather permitting .And of course my dog he brings so much joy and love, nothing like sitting stroking him calms me down.Please keep safe.xxxx

[Hidden in reply to Hidden]

Glad you are adjusting. My garden has a yard that part shared and until it's summer the bottom gets no sun so I will have to wait in case I bump into someone on the way out!

You stay safe too 💜

[9lives]

Hi PMRpro

Many thanks for the info, all very informative.

I got my letter last week, although have been staying at home anyway. It seems we are lucky to have all this support in the UK

.

Please take care everyone.

Let’s hope things improve soon x

Carole x

[PMRpro Ambassador in reply to 9lives]

There is certainly more on offer than I have here - but how easy it is to access I don't know.

[Hidden]

Thanks for the very helpful links and flowcharts. I used to explain to my GP.

As usual, what happens with NHS England is different in NHSWales ( and possibly Scotland and NI). On the England site, it’s possible to self register if you haven’t had a letter and believe you’re vulnerable. There’s no such facility in Wales.

I spoke to a GP and after being subjected to the Spanish Inquisition about why I thought I was vulnerable, I was asked what work I do. I said I’m over 70 and retired. I was told identifying vulnerable people only applies to those who are working. GP said it’s all being controlled from Cardiff and local surgeries have no involvement.

When I’m better prepared to take the issue up again, I’ll make further contact, but frankly it’s disgraceful. I want to arrange for prescriptions to be delivered and the pharmacy say they’ll only do it if you have a vulnerable letter! I can see I’m going to have to go and collect at this rate.

[PMRpro Ambassador in reply to Hidden]

I'd think your GP is wrong if that is the case - if you can't get the essential deliveries it is one way of killing off the pensioners though! Maybe there is logic in their thinking ...

[Suffererc]

Thank you, but no have not had letter. Just assumed we with PMR would be high risk. Doom and gloom anyway if the over 70s get it in the UK

[PMRpro Ambassador in reply to Suffererc]

PMR itself is low/intermediate risk, on above 5mg pred is moderate risk - and then you add any co-morbidities such as asthma, hypertension, ischaemic heart disease, or additional medication such as DMARDs or higher dose pred (above 20mg). If you are on a biologic drug (tociclizumab for example) that is automatically high risk.

[Pixix]

Help, please, I can’t find the flowcharts from Cambridge (Addenbrookes?) that helped you work out if you come into the shielded category. I want to share it with a couple of friends so they can work it out. Would have put it on today’s Covid-19 chat, but can’t find that’s either! Brain fog severe in this household today, I did look at the pinned posts, too. I think you posted it?..? Hope all well, S x

[Hidden in reply to Pixix]

Hi, not you....took me a while and I have directed people to it 3 times in last two days.🤪

Here it is and I have pinned it for future reference.

healthunlocked.com/pmrgcauk...

[Pixix in reply to Hidden]

Thanks! You are so kind to spend the time to help me, I really appreciate it. Take care, S xx

[Hidden in reply to Pixix]

You too. I have made use of your confinement process!

[Pixix in reply to Hidden]

Good news! S x

[PMRpro Ambassador in reply to Pixix]

Don't forget to add a level for appropriate comorbidities ..

[Pixix in reply to PMRpro]

I fit shielded because of the pred intake and still high as only diagnosed in December, but I have a history of repeated chest infections and I was a patient of a professor in large respiratory dept...sent there as a ‘mystery case’ I turned a mild cold into a six weeks nightmare with steroids about four times each winter! What other Comorbidities should people be thinking of, please? Age? S x

[PMRpro Ambassador in reply to Pixix]

I listed them earlier I think - history of lung disease of any sort including asthma, hypertension, renal problems and cardiovascular disease especially ischaemic heart disease. So technically angina comes under that. And obviously over 70.

[Pixix in reply to PMRpro]

Oh yes, forgot a couple of those, thanks. I have asthma in my history, too! Thanks, S x PS bad flare up of PMR right now, made an error with my tapering. Doctor phoned me yesterday I’ve had to up the pred at just the time I want to be lowering it!

[PMRpro Ambassador in reply to Pixix]

Given the rest - don't think a few mg pred will be significant! The predilection to catch it is pretty high for anyone, an apparently good immune system is no protection. But the pneumonia becomes the problem - and being on a ventilator means any problems make management difficult.

[Hidden in reply to PMRpro]

I think even with the dmard, I feel more concerned about diabetes and hypertension in the event off.

[Hidden in reply to Pixix]

And have you had extra treatment for a flare in ...can't remember time but 4 wks??....but in a box on the flowchart where it says over 70...

[Pixix in reply to Hidden]

Sadly had to go back up again and take more pred for next two months to solve this bout if inflammation. Then doctor advises reducing more slowly. I was too keen, and thought my chances of surviving the virus may be better if I could get to 10mg or lower. But I’m more worried about my lung history than the PMR. I can’t cope with a common cold! S xx

[Hidden in reply to Pixix]

Well you have really good isolation practices. Just keep washing hands and not touching your face. It is worrying when you have your history but just keep doing what you are doing. 💜

[PMRpro Ambassador in reply to Pixix]

From my reading and understanding, the risk is far less the getting it than the surviving it. And in that context the better controlled any comorbidity you have, the better you are likely to do if you were to catch it. and the major objective is to avoid catching it.