Shielding letter???

[Lola5670]

Today I received a letter from gp dated 13th April advising me to stay in for 12 weeks to protect myself from covid, I am currently on 10mg pred and aiming to lower it to 9mg soon, but read on a thread from here that it was only people on over 20mg that needed shielding, can anyone advise. I have been going to my local shop once a week prior to this letter, but obs won't even be able to do that now.

[DorsetLady PMRGCAuk volunteer]

This is advice -

You add up the scores that apply to you - so looking at it you score 2 for the amount of Pred plus anything else that applies - over 70 or other issues listed? score 1 - equal 3 - should be shielding -

rheumatology.org.uk/Portals...

[Lola5670 in reply to DorsetLady]

I am only 49 years and apart from some mental health issues don't have any other underlying health conditions

[DorsetLady PMRGCAuk volunteer in reply to Lola5670]

Well GP thinks it’s necessary, but you can ask why if you don’t agree.

[SheffieldJane in reply to DorsetLady]

Do you know if the period of time you have been taking Pred is a factor?

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

The guide states “4 weeks or more”: so if over 20mg you score 3 points - for lower than 20mg but higher than 5mg you score 2 points.

So I imagine you would fall into the group that scores 2 - unless you have any of the other issues mentioned, and then you’d score 3.

[SheffieldJane in reply to DorsetLady]

I am on 3 mgs now but started February 2016 on 20mgs. There is also a question mark over hitherto untreated upper extremity GCA. Raised blood pressure, so I guess the letter is accurate. Others seem to contend with so much more. I am in my 60’s.

[PMRpro Ambassador in reply to SheffieldJane]

A lot of doctors consider that 20mg is enough for LVV - which is what you are technically showing. So you have been treated hitherto in the sense of in the past - just perhaps not currently, But she doesn't seem that bothered or she would have raised the pred.

[SheffieldJane in reply to PMRpro]

That’s true. Only TA symptoms would prompt an increase at present and A&E.

[Lola5670 in reply to SheffieldJane]

No, speak to different GPS all the time I spoke to one gp prior to receiving the letter and he obs hadn't read any of my notes, didn't even know why I was on pred and how long I had been on it and told me to go and have a blood test on the hospital, and yet about sm hour later received shielding letter from the gp surgery!!!!!

[Hidden]

In addition to the Rheumatology score there are other factors taken into account. Hypertension, diabetes, BMI all these things are aspects that can lead to the Dr putting you on the shielded list.

[Lola5670 in reply to Hidden]

Ah ok, thank you

[PMRpro Ambassador]

It is the history that is important - and you have been on a high enough dose of pred for long enough to lead to adrenal suppression - and that would be significant in managing you if you developed a CV infection.

The thread you saw was probably one from quite early on before they really got the guidelines sorted out and it is only really at that sort of dose that most people would be considered immunosuppressed. But it is not just the medication and dose. Having PMR increases the risk, then you add the pred, any dose above 5mg over a long time adds to the risk. And then there are any other medications and conditions such as high BP, obesity or diabetes.

[Koalajane]

I think there has been a fair bit of confusion about the letters judging by someone on the television this morning. Also the fact that they are still going out makes one wonder.

[Lola5670 in reply to Koalajane]

Agree totally, but until I received this letter had only been socially distancing myself, even went to my little sainsburys local yesterday and ordered a reusable face mask for future trips to the shop. Obs not necessary now. Now need to try and get a shopping delivery slot, but no luck at all. What's even more frightening is that I spoke to a gp this morning before I received the letter and he told me to go and have a blood test as I have dry patches on my back. He had obs not read any of my history before talking to me

[Suet3942 in reply to Koalajane]

So far I’ve had 3 letters all exactly the same.

[PMRpro Ambassador in reply to Suet3942]

Does that mean you have to shield for 36 weeks ...

[Suet3942 in reply to PMRpro]

I take mx. I may be better off stopping it and upping the pred. Perhaps I wouldn’t be such high risk. Don’t know what to do. Have heard that may have to stay in until a vaccine is available.

[PMRpro Ambassador in reply to Suet3942]

I have to say I would be reticent about starting mtx at present - and would be seriously thinking if I were on it.

[Hidden in reply to Suet3942]

It's difficult to make decisions like that and I can't say that I haven't thought of stopping the dmard myself. I have been flaring and just getting things under control. After a few years on the dmard I really don't know if I would end up back where I started at 15mg and in terrible pain. So it's status quo and try not to rock the boat, or go out and risk getting infected.

You can't listen to rumours of theories of what may or may not happen. It's right back to the beginning of any chronic illness. One day at a time. Of course there are some different pressures but you do have to do one day at a time. A month has passed in the blink of an eye (even though it's elastic time and seems like forever too). I struggle just as much as anyone and have my arrrrgh days, usually about food and meds, or delivery drivers letting my dog out etc. But I do have to submit to the idea that I am here for the long haul. 🥴

[PMRpro Ambassador in reply to Hidden]

A lot has to do with whether it has made a difference to you - which it has for you Poops.

[Hidden in reply to PMRpro]

Yes. That why I daren't rock the boat. If it was just causing grief and side effects it wouldn't have lasted!?

[Suet3942 in reply to Hidden]

Thanks Poops.

[Hidden in reply to Suet3942]

I just look at stuff like this as my main thing then supplement.

nhs.uk/oneyou/every-mind-ma...

[Panni]

If you taking or took Prednison, you are immune compromised enough. Better to be safe than sorry. Taking Prednison applies you have an underlying health condition. Do not worry about the scores, stay home, stay safe .Your GP is caring enough about you. Please stay safe!

[kalimche]

Hi Lola - I was interested about the "dry patches on my back" - I find I have very dry skin on my back since I started on Pred back in Oct 2019 (15 mg, currently tapering to 8 mg). So maybe this is a common symptom? What did your GP think the blood test would reveal?

[Lola5670 in reply to kalimche]

Am not sure what he was checking for, but told me that it was just dry skin and to treat it with moisturiser, dont know what blood tests were for. It was a telephone consultation and this particular gp has never been involved in my pmr or pred usage. X

[Beccabee123]

Hi Lola. If you have your shielding letter you can register on the uk. Got vulnerable list which gives you access to priority shopping. Usually takes about ten days and then supermarkets should email you. I think Sainsbury’s , Asda and tesco offer priority shopping.

[Heather270240]

Is this shielding letter the same as the NHS letter? I have registered with GOV. UK stating that I am a clinically extremely vulnerable person and had a letter of acknowledgement from them saying that if I haven't received a letter from NHS or been in contact with GP I should contact them. I have phoned GP 3 times and asked about the letter and yesterday was told again that it's nothing to do with GP I have to go to GOV. COM website and print it myself. I have had a letter from Haematology who I am under which just states the various categories of vulnerability not that I am vulnerable. Can someone enlighten me please.

[Lola5670 in reply to Heather270240]

Mine was posted from my gp surgery and dated 13th April it states the NHS has identified you as someone at risk of severe illness if you catch coronavirus. Goes on to say stay at home, avoid all face to face contact for 12 weeks from date of letter. Hope this helps.

[Hidden in reply to Heather270240]

It will say something like you are at extreme risk if you get covid 19 so are shielded. It will have shielded in it somewhere or maybe not these days!!

It's the NHS Coronavirus service.

[artfingers]

There are autoimmune conditions that cause "dry patches" so possibly the doctor wants to determine by blood tests whether you have something else like that, then that might be the reason for being extra careful and call for shielding as wouldn't that raise your score? Just a thought. Sorry the doctors aren't paying more careful attention to your history/notes!

[Lola5670 in reply to artfingers]

No the letter was written in 13th April I only spoke to a gp yesterday re the skin complaint, so don't think that was why my score was upped to shield. Think u could be right though that maybe that is why he wants blood tests, but when I spoke to receptionist at gps later re having just received the shielding letter she advised me not to go and gave a blood test unless it was urgent, which obs it wasn't

[Arflane97G]

Just got off phone to gp as my repeat prescription for Pred seems to have disappeared! She mentioned in passing that shielding letter is on its way as I am deemed high risk even though now at 4 mg ??? This all seems rather late to me. I do have priority delivery slot for online shopping and but do go out for walks most days and I think I will continue with that otherwise will go complete mad. Most people seem sensible and give cheery wave as they veer to side of the pavement!