Confused re shielding : I have read had the letter... - PMRGCAuk

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Confused re shielding

Jancorb profile image
60 Replies

I have read had the letter from NHS with the chart about levels of shielding, I'm uncertain which category I come under.

I've had PMR for 4 years, I have been stuck at 7 mg Prednisolone for months, I also have high blood pressure and take Lisinopril and Verapamil .

I don't take any of the drugs in the blue box, I stopped taking methotrexate 8 months ago. I'll be 70 next month.

So does this mean I'm not at high risk?

Thank you

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Jancorb profile image
Jancorb
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60 Replies
SheffieldJane profile image
SheffieldJane

It is getting confusing. I think the fact that you are being treated for hypertension and have been stuck at 7 mgs for months ( over 5 mgs) is enough to put you in the Shielded category. Possibly your forthcoming birthday too. There aren’t many benefits as far as I can see but I would stay at home and if needs be explore how to get provisions delivered etc. Poopadoopy is very good on these points. Check with your surgery. Presumably your letter gives you further guidance? I have been confined to quarters since 8 March for similar reasons. My OH is my link with outside , food, medicines etc.

Constance13 profile image
Constance13 in reply toSheffieldJane

I like the military "confined to quarters".😂 Better than "lockdown" which I always rename "locked in".

If the letter says shielded you are. If it means you are vulnerable then isolating probably best anyway.

I would think the high blood pressure, even if controlled is an issue they are concerned about and your age, with the auto immune and pred situation drop you in the high risk too and a high BMI can be counted as a risk too . It is all taken into account as a total history.

Jancorb profile image
Jancorb in reply to

Hi, the letter has the chart done by Addenbrooks that you follow to see if you are high or moderate risk. I seem to fall between the two.

I spoke to my GP on Friday, just about maybe trying to reduce the Preds, knowing I've tried numerous times he said to stay as I am, I don't need a flare at this time.

We've been shielding since 15 March after we made a hasty escape from a Spanish campsite.

We are both fine but I think we'll be here for the long run, lots to do in the garden. Keeps me fit and at a sensible weight.

in reply toJancorb

I think you are being sensible isolating and not reducing too quickly. I had to have a bit if an increase for a flare . I started distancing around 15th march too. Well, most of march I oy went on a couple of walks then apart from emergency med runs that's it. I am hoping to get in the garden, but it's rather shared so I have to wait until the kids aren't playing! Grow bags delivered tomorrow so all systems go!

P.s just copied this from the shielding bit of gov uk...

"The Government is currently advising people to shield until the end of June and is regularly monitoring this position." 🤪

SheffieldJane profile image
SheffieldJane in reply to

Don’t forget the gallop after your daft mutt. X

in reply toSheffieldJane

That was scary. Silly delivery man!

A please close the gate sign up I think. Once I have explained to the neighbour. The gate was dodgy and I have my neighbours oh a glue gun and asked him to flx it!

Pixix profile image
Pixix in reply to

Hi...trying to find that on gov.uk for a friend who has cancer, multiple myeloma. Thought I’d break it gently, but she won’t believe me!!! Any clues. Shielding is huge area on web site now. Thanks and hugs S x

in reply toPixix

Here is the shielding advice and myeloma at any stage of treatment is the shielding category. They did say if anyone is terminal and with a 6month period to live they could make their own minds up.

gov.uk/government/publicati...

Pixix profile image
Pixix in reply to

Thanks so much. Yes, she’s received the letter...long ago, & has implemented the same quarantine system I put in place with ‘goods in’. But she had a stem cell transfer & is remission...she just wants to get on with her life, but will stay shielded as long as it takes. My brother had this for 3 years, same saga, but one day got a chest infection...& just didn’t have the strength left to fight it. Thanks so much for the link. Appreciate your help, S x x

in reply toPixix

No problem. Hope all okay. I am heading for the garden hoping the kids won't like the clouds. Got grow bags delivered an hour ago so all systems go!!☺️

Rosbud profile image
Rosbud in reply to

Just managed to pop out to our garden and do A bit of pruning , have to dodge the kids next door , enjoy your outside time x

in reply toRosbud

I of course have overdone it in 2 hours and not even got the growbags up and running. 🤣😂🤣 I have sort of moved about 300lts of compost in various ways from shovelling to sliding an 80ltr bag up a plank to put in my new raised bed. Have yo stop now. 🤢

Rosbud profile image
Rosbud in reply to

You have done well , yes I’ve had to come in as next door are out and can’t resist leaning over the fence but at least I had an hour outside , don’t over do it xx

in reply toRosbud

I did overdo it but coming round now! One of the kids came out playing cricket against the wall. Like you say they have a lean across the fence. It's sweet though as they always want a chat.💜

Rosbud profile image
Rosbud in reply to

I love chatting to the two little ones but get cross with the parents, Mum is supposedly shielding , sent home from work in the NHS as at risk on methotrexate and still going shopping everyday and out walking the dogs daily , just don't understand her !

in reply toRosbud

It is foolhardy isn't it. I think I am overly cautious but better safe than sorry. I had a mask in the garden because the thought of someone walked across the shared yard without me getting 2m away freaks me. I lock the gate if I am near it so I can't be too surprised! Fortunately the ones that side don't go out much and the kids not at all as one is shielding so the older one isnt allowed out. .bless him. It there cousin 2 door away that play in the "compound" their garden has become. The one not allowed out stands in the window watching!

PMRpro profile image
PMRproAmbassador in reply to

Bit pointless ...

in reply toPMRpro

The two confined ones are properly isolated and mum and dad shed clothes and showers before they see kids.

jules1955 profile image
jules1955

Hi there, I have had PMR for about 5 years, I am also on 7mg Pred and I take Lisinopril for BP and Levathroxine for under active thyroid. I am 65 this month. I have not had a letter to self isolate. I telephoned my Doctors surgery and was told I am not on the vulnerable list. I am frightened of getting this virus and have been staying home. I realise I can’t do this for ever and I will be extremely careful if/when I start to go out. I am also worried about meeting friends again.

SheffieldJane profile image
SheffieldJane in reply tojules1955

I would follow most of the Shielding advice anyway. Some of the decisions seem a bit random to say the least. Policy makers are looking at this in a global sense, we need to take care of number one. I think a lot of us will remain cautious for a long time, no matter what we are told we can do. Mind you, a little walk with a friend 6 feet away, at a quiet time would be refreshing and minimal risk. Daybreak is a beautiful time - not a soul about.

Bailybiscuit profile image
Bailybiscuit

I am also confused. I saw the Addenbrookes chart and it was different the second time I looked as they were updating it and were using another chart. I too am confused as a biologic nurse told me due to taking 5 mg steroids some days I should be shielded. ( I also take methotrexate and humira ) I have been on steroids 6.5 years and am 67. I am high risk but when I asked my GP she said that I wasn't bad enough. I do feel neglected as when you start these medications, especially methotrexate and biologic you are warned not to go near anyone with a cold even. I have been staying in on my own advice!

SheffieldJane profile image
SheffieldJane in reply toBailybiscuit

My Rheumatologist has deferred considering drugs like Methotrexate for the duration, having been a strong advocate. I suspect it carries more risk than Pred in terms of suppressing immunity and it needs much closer supervision. I believe it can be stopped without tapering. If this is worrying you, it may help to have that conversation with your doctor. I am yet to be convinced that it would bring more benefit than harm.

Bailybiscuit profile image
Bailybiscuit in reply toSheffieldJane

My Dr has nothing to do with methatrexate, only prescribing it, she leaves that and humira to the consultant and the letter I got said it is important to keep taking all the medication unless I get symptoms of virus, then stop.

SheffieldJane profile image
SheffieldJane in reply toBailybiscuit

What about the monthly blood tests to ensure that your liver is ok?

You may be able to talk to a Rheumatology Nurse, at least.

Bailybiscuit profile image
Bailybiscuit in reply toSheffieldJane

My monthly blood test has gone to 3 monthly for the time being.

in reply toBailybiscuit

Those drugs put you in high risk. Some drs need to check their knowledge. It's a good job one of you has common sense!

PMRpro profile image
PMRproAmbassador in reply toBailybiscuit

The letters are predominantly for patients with an inflammatory arthritis on such drugs. That is their pred - or pred is our mtx, depending on how you look at it. They are taking it as their primary medication - we take it in the hope it might lower the dose of pred we need. It isn't essential...

Bailybiscuit profile image
Bailybiscuit in reply toPMRpro

I do have inflammatory arthritis as well. Funnily my Dr rang just to see how I was and I told her I thought I should have had a letter. Her reply was "Haven't you? I told her she told me I shouldn't and she said that I should and I will be getting one and a nurse will come and take my blood from home

PMRpro profile image
PMRproAmbassador in reply toBailybiscuit

That's good - about time!!!! Wonder where her brain was the time before!!!

Bailybiscuit profile image
Bailybiscuit in reply toPMRpro

I don't know , probably just very busy, she walking for some time and doesn't know when thy will be back to normal if ever.

in reply toPMRpro

I had the longest conversation with the Dr l ever have last week. She asked how I was doing and we chatted about covid in general and her lack of knowledge was a bit scary. Funnily enough on the phone I felt like I was being treated as a person more than usual!

PMRpro profile image
PMRproAmbassador in reply to

I had a similar conversation with our GP - think she needed some sane conversation besides her husband! And the 4 kids ...

in reply toPMRpro

That's a thought!

Jancorb profile image
Jancorb in reply toSheffieldJane

Hi, I stopped methotrexate without tapering, no problems. My GP is pleased I did as it's on the at risk drug section.

Rose54 profile image
Rose54

Hi

You are most definitely in the Shielded group

Looking at the chart

1 yes you take more than 5 mg a day of steroids

Then go to are you over 70 and then mentions the conditions which although you are not 70 you do have blood presure even if its controlled with medication .

I myself found I was in this group due to HA

never had a letter but found out from phoning my GP practice

Thiers lots who come in the Shielded group but have not had the letter 3 of us in my immediate family alone .

Take care

OrwellMan7 profile image
OrwellMan7

Immune system is compromised so I would say high risk

PMRpro profile image
PMRproAmbassador

Your history puts you at risk - above all the high blood pressure is a risk factor for difficult management IF you were to catch Covid-19.

You have to remember that the rheumatology chart is for rheumatology patients - other risk factors have to be added in as well. And offensive as it may be to some people, being older, healthy or not, is an added factor in the death rate from Covid-19. There is a clear relationship to be seen in every affected country: over 60, every 5 years adds to the death rate, There is a significant rise by 70, irrespective of state of health. No, not everyone will die, but your chances will be less good. And it really isn't just live or die - a group of healthy divers in Austria have been told the lung damage is such they may never be able to dive again and will probably need medical monitoring for life. There are in their 40s.

In terms of the pred - no point at all trying to reduce faster or even at all if you can't. It is the history - you have been at a low to moderate dose of pred for months, that will affect your adrenal function for the foreseeable future: it is felt to take up to a year after stopping pred entirely to regain reliable adrenal function in the effect of stress or illness. PMR itself makes you increased risk, the BP problem adds to it making you at least high risk. You may not need to shield - but you do need to practise strict social distancing.

Here in Italy we don't have shielding as such but everyone over 65 is told to stay at home and only go out to shop - which has meant you can't go outside your village or more than 400m from your house door. We must also wear a mask, everyone, no exceptions, and keep 2m from others, 1m in food shops (nothing else open!), Does make it simple though!!!!

SheffieldJane profile image
SheffieldJane in reply toPMRpro

I sent for masks way ahead of time, weeks ago. No sign of them. I was had. Possibly by a Chinese firm ( not at all clear on Amazon) currently in dispute, probably pointlessly. Beware!

in reply toSheffieldJane

Lee on Gogglebox has saved my mask life. I put a spare HEPA filter in from my vacuum 🤣😂🤣

www-express-co-uk.cdn.amppr...

SheffieldJane profile image
SheffieldJane in reply to

😳 you never cease to astonish me.

in reply toSheffieldJane

The good thing is you can throw them in the washer on return. I used it for blood test drive through. It's not a great look but who cares. It was comfy but if you wear glasses all masks seem to steam.you up.

in reply to

Read that soapy water on glasses helps with fogging. Don’t rinse. Dry. Something about it effects surface tension so they don’t steam up. Like we used to apply saliva to snorkel lens? Same principle? 🤗

in reply to

That's right...they use baby shampoo on gold divers ...good idea!!

PMRpro profile image
PMRproAmbassador in reply to

Saw something about shaving foam and rinse well

Polypoly profile image
Polypoly in reply to

Think it’s known as the Tony Curtis Look! - he didn’t mind ☺️ Wotta film!

PMRpro profile image
PMRproAmbassador in reply toSheffieldJane

I say masks - face coverings. The green masks are actually pointless, probably either way, but a scarf adapted to cover face and nose and not slip is fine and reusable after a soapy wash. They have issued free snood-type things here to pull over your mouth and nose - mine was a child size so I added elastic and strings and now have a double layer veil-type thing that is easy to use - and you can breathe! But it is the fact that everyone must do the same that is quite supportive.

in reply toPMRpro

It also have a lace through a snoodt thing which ties round my head and hangs loose for the garden. I tuck it in my collar. Lone ranger style.

Constance13 profile image
Constance13 in reply toSheffieldJane

I've had a batch of Chinese masks. They look rather dodgy to me (Amazon). Would only use them if I had run out of European ones.

PMRpro profile image
PMRproAmbassador in reply toConstance13

You won't be using them in theatre or to barrier nurse - they'll be as good as home made ones!

Constance13 profile image
Constance13 in reply toPMRpro

Do you think home made ones aren't so good? I must admit I wish I could make my own, but OA won't allow it. Mind you, I don't think they'd look too good anyway - I have two left hands as far as "do it yourself" is concerned.

in reply toConstance13

Constance I literally have used a set of white trainer sock I wore once, didn't really like and washed and left in a drawer. I cut the toe off and the elastic and do a 3/4 width cut about 1/2 inch in at both ends and put the loops over my ears. You can stuff extra material in the sock middle. I just chuck them in the washer after going into the garden or whatever.

This would be me trying to make them.

youtu.be/U4c5eo_3-y0

Constance13 profile image
Constance13 in reply to

I've read the "sock" idea!? What a hoot!

PMRpro profile image
PMRproAmbassador in reply toConstance13

What I'm saying is what YOU need is a "face covering" - and it is doing something different to what the PPE that healthcare workees need, The green masks don't protect them - they have to be special ones and they need visors too. Any face covering is better than none in this context. It isn't stopping you getting CV, it is reducing the amount of virus you would shed if you happened to have it with no symptoms. And the only way it works is EVERYONE has to do it because, by definition, anyone who is asymptomatic doesn't know.

Constance13 profile image
Constance13 in reply toPMRpro

We have to wear masks anyway, in most public places. In the park we don't as long as we keep 2 metres apart. I suppose it is the same where you are, isn't it?

PMRpro profile image
PMRproAmbassador in reply toConstance13

Must have a face covering to hand. Here don't have to wear it outside unless you are approaching/being approached by someone, distance immaterial. Must wear it in a shop or if talking to someone - at the required distance!

Some shops have gloves at the door or hand gel and wipes to clean the trolley handle - I have kitchen roll and cleaner in the boot, I clean it before I touch it! But you don't get in without a face covering of some sort.

Jancorb profile image
Jancorb in reply toPMRpro

Yes, it's good to have defined rules. I'm not bothered about being told I'm at more risk hitting 70, we've made the decision we are in the safest place and have no intention of joining any shop queues.

Those complaining they are healthy over 70's might be lucky, but why risk it?

PMRpro profile image
PMRproAmbassador in reply toJancorb

Given young healthy people got it and died or nearly died - I'm happy to stay at home even though I am well under 70! It would kill my husband - can't breathe anyway - but even if he didn't, I have fairly much been out of circulation because he was in hospital and is still recovering, it wasn't much of a change except I didn't have to keep going to visit the hospital. It's been something of a rest cure and I haven't had to feel guilty!!!

valrene profile image
valrene

Hi Jancorb, I’m not on pred anymore but take Leflunomide, 2 weeks ago had to get in touch with Gp as had a virus for 4 weeks wasn’t getting any better with pains in chest and back when breathing kept bringing up mucus and couldn’t stop coughing, he reckons I may have had covid prescribed antibiotics, he doesn’t treat my pmr my Rheumatologist does, he didn’t say a word about shielding. Finally after 6 weeks of lockdown I received a letter from the rheumatology telling me that I may get a shielding letter, saying that if a get covid or any other virus to stop taking Leflunomide for 1to 2 weeks, that letter was dated March 26th only received it 27th April. On Saturday 2nd May had a government phone call that now I am in shielding did I want any help with shopping or anything else, the lady couldn’t believe I hadn’t had my shielding letter, wrote it out as we spoke, then yesterday 3rd May had another phone call from Dorset county council asking me what help I needed so I didn’t have to go out, that lady couldn’t believe I hadn’t had a shielding letter, I’m 70 have diabetes type 2,pmr,high blood pressure and on Leflunomide. I know we have never had to live through such a bad virus for years and every country is stretched but do feel we have all been forgotten, I have been careful only going out once a week shopping, if I have run out I have popped out again to the shops not any more I go without now, once you are on the government shielding list you can get a priority shopping slot on line, was asked if I need any help dressing or with housework, once you are on the shielding list you have a number to phone if you are in any difficulty, they were worried if I lived alone or didn’t have any one to talk to. I think in the UK they have had so many people to write letters to that’s why mine took 6 weeks to arrive, also think if you are under a consultant at rheumatology you are more likely to hear. Best of luck hope every body stays safe x

Jancorb profile image
Jancorb in reply tovalrene

Take care, glad you are now getting lots of offers of help.

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