High Risk Letter: Hi everyone, I hope you are all... - PMRGCAuk

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High Risk Letter

jules1955
jules1955

Hi everyone, I hope you are all coping and are well. I was just wondering how many have had a letter to self isolate as they are high risk ? and if you haven’t does that mean that you are not high risk ? ( I haven’t had a letter ) I have stayed at home for the last 4 weeks. My husband is doing the shopping. I have taken a couple of short walks. Poinsettia is from a supermarket in December and doing well. Love to all ❤️

141 Replies
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Hidden
HiddenModerator

It depends what dose/ meds you are on, your age and other health issues. I would imagine that most if not all letters are out. healthunlocked.com/pmrgcauk...

ParsnipSoup
ParsnipSoup
in reply to Hidden

I was sent a Generic NHS letter sent to me via my Rheumatologist’s Secretary. He checks his patients vis his Secretary every week, he has Coronavirus himself. I have been isolating for five weeks now.

Hidden
HiddenModerator
in reply to ParsnipSoup

Getting checked weekly is really good - I hope the rhrumy recivers. I got the text, letter then a pack from the Rheumatologists with a version of the flow chart in pmrpro post. That was the start of the avalanche of texts an letters re different condition. Exhausting 🤣😂🤣

ParsnipSoup
ParsnipSoup
in reply to Hidden

I don’t normally have contact with him unless I need to. I think it is so attentive of him during the present time especially as he is unwell himsel

katiemills
katiemills
in reply to Hidden

I was surprised to receive a letter only 2 days ago - 17 th April.

Oops- meant 16th April! All the days roll together .......

Hidden
HiddenModerator
in reply to katiemills

I suspect there will be trickles as gp come across people but you would think the computer system would have a search facility for conditions and treatment!

katiemills
katiemills
in reply to Hidden

Absolutely! I’ve been at home all the time since lock down anyway but two weeks ago my GP told me to come in and get my bloods done ( I’m on methotrexate) and later that day I had to drive my husband to A&E because he tore his Achilles’ tendon ! ‘‘Twas not a fun day out !

Hidden
HiddenModerator
in reply to katiemills

It gets scary does it. I got and infected hand on day 2 and fortunately got antibiotics and antihistamine prescribed. I hoped that wasn't a start if things that mean you are reliant on others to get prescriptions etc. Thank goodness for my neighbour.

I'd you are high risk then your gp should have notified everyone on his list by now but it you only have pmr then this isn't necessarily going to her you the letter. It depends on pred levels and if you have other illnesses to take into account. As you are basically sheilding yourself anyway and your husband is able to do shopping it's up to you whether you need the letter in which case you should speak to your gp. YBB

I don’t think it is a very accurate system. You could prompt it by contacting your GP. I think most of us with an autoimmune disease and immunity further suppressed by steroids and other conditions such as hypertension and diabetes. Chest conditions, heart conditions, treatment for cancer, or are over 70 years. In your place I would continue to do as you are doing. The letter doesn’t really bring benefits unless you are employed or need an on-line shopping slot. It’s quite dismal to get one, it curtailed my little walks.

It is not that we are more likely to contract it so much as the outcomes being poorer if we do. 🌷

Hidden
HiddenModerator
in reply to SheffieldJane

You don't get a slot that easily, I was texted to say I was on the priority list and just got the last Tesco one in my area. It's a good job as there are non for 4 weeks. I am supposed to be "high risk" not just vulnerable and still can't get meds delivered with 7 to 10 days. Which would be fine if I can order them early. But it won't let me and it takes 50 to 80 redials to get through to drs. I would be ok with that if I didn't get the calls from agencies saying I am top priority and then can contact them to get help when I need it.

If someone has a person that can go out please let them, then those living alone can get help!

SheffieldJane
SheffieldJane
in reply to Hidden

That is scary. My pharmacy wanted me to be right up to the line before they would authorise another batch. I guess I need to order much earlier. Glad you got that slot Poops. My OH does all of this and seems to enjoy his missions. I should be more grateful really. I did buy him his first ever track suit bottoms which he seems tickled with.

I don’t suppose agencies can intervene with pharmacy problems?

Hidden
HiddenModerator
in reply to SheffieldJane

Yes but the social worker allocated is on leave this week. I will get it sorted I never usually get them delivered. But they need to realise that ordering early is required as the stress of not having certain meds is terrible. Imagine the stress when you get low on pred then times it by 10 other meds I need and will suffer and/or be really ill without.

Yes...it's good to have someone. My neighbour will get stuff like milk or other bits but the pharmacy closes too early at the moment for her to collect. The stupid thing is she is working in the hospital pharmacy at the children's hospital.

SheffieldJane
SheffieldJane
in reply to Hidden

I was going to say can’t you get your prescriptions transferred there temporarily but then imagined the nightmare that would probably ensue. Terror is the word.

Hidden
HiddenModerator
in reply to SheffieldJane

I think the hospitals are bonkers and she was concerned she would be seconded from her clean room to the bigger hospitals i think. Part of the problem is that some pharmacist from the city have been seconded.

I chuckled at the image generated in my head as I read your amusing ‘Tracksuit Bottoms’ comment, when I pictured yr OH racing along to get missions completed at enhanced speed induced by the sporty white Stripes down the two legs! They do make one really fly I find......

But SJ - your PMR comments are always to the point and very helpful.

So accept my thanks for your health messages amongst the good humour.

Thank you! I could only get away with a tick on them though, and he planted 3 rose bushes in the front. Great return on the investment.

Nike to the Core then Jane....enjoy the 🌹.....

Keep up your absorbing posts here

Thanks again, - S.

Bless you and yours Polypoly! All will be well. ♥️

jules1955
jules1955
in reply to Hidden

My husband enjoys getting out and is not high risk ( very healthy ) so its not a problem x

Hidden
HiddenModerator
in reply to jules1955

That's great to have him doing the trips out. It probably makes him feel very useful too.

Noosat
Noosat
in reply to Hidden

Here in Texas it is almost every man for himself/herself. The federal gov't/president won't take responsibility, leaving it to the states and in this state the wishy washy governor wants to leave it to cities and towns. The local grocery store, which is great, will allow requests for goods to be picked up. My daughter did this for me twice, but I went to store yesterday wearing mask and gloves. It was good to choose my own substitutes, if I couldn't find my first choice. I plan to go back in about a week. Most all the people I saw were wearing masks by choice. Only certain amount of people allowed in store at any one time. So far only 4 cases in this county, however, San Antonio 50-60 miles southeast is emerging as another "hot spot." People commute from here and vise versa for work. There is so little testing that we don't really know the spread of the virus.

Hope all stay well

Hidden
HiddenModerator
in reply to Noosat

Please be safe.

Noosat
Noosat
in reply to Hidden

Doing the best I can. My daughter is the "dragon at the door." She is strict about any visitors. (my son has to leave packages on my doorstep). We have role reversal. She tells me what I can and cannot do. It was a bit of a struggle to get her to agree that I could grocery shop. I won't let myself resent it, instead I think, " it's nice to be looked after and not always have to be the "strong" one." When she called me this early morning, as she always does, I told her that following her advice I had a poached egg with my English muffin this morning, not just the muffin, before I took my 3mg of prednisone. :)

Hidden
HiddenModerator
in reply to Noosat

Good. I am glad you are being supported. 🌻

PMRpro
PMRproModerator
in reply to Noosat

Not sure I would believe "only 4 cases" unless there is widespread testing. In the last few days they have done antibody testing across our region and in a valley that was very badly affected by conventional standards with a claimed 6% infection rate they have found that 49% of the population has antibodies showing they have been infected at some point. That is the sort of figure that has been suspected for some weeks here- that at least 50% of people infected do not have symptoms but are wandering aorund spreading the virus.

Noosat
Noosat
in reply to PMRpro

Of course those with any sense do not believe the number 4. As you say, there is very little testing done. Much more could be done if the federal government would "man it up" and make sure testing is optimum. In a few states some crazies are listening to that dumb a...…. in the white house and are demonstrating against their governors to have any kind of restriction lifted. They keep talking about "freedom and rights." Well I and others have the freedom and right not to be infected because of their careless behaviour

Pixix
Pixix
in reply to PMRpro

At long last! That’s the sort of figures I thought they would find. Sad, but true! Hope it eases for you soon. My friends in Lombardy seem to be angry about the way it’s being handled at the moment, & say there are people ‘cheating the rules’ a lot now the lockdown has gone on longer than expected, S x

Hidden
HiddenModerator
in reply to Pixix

I think the figures are going to be enormous which means people like us who are currently shielded/isolating will still have to be super careful until a successful vaccine is manufactured and distributed. Of course as Bill Gates said this morning (much surprised to see myself quoting him;!!!!), We may have to accept a vaccine that potentially causes different issues after a couple of years by bypass the more rigorous testing.

PMRpro
PMRproModerator
in reply to Pixix

They have been suffering much longer than the rest of us - but lifting the restrictions does raise the risk of a third wave - because I'd say Lombardy has had 2 lots already. The longer a physical recovery can be assured the better - but it must be hell for businesses. Where are they?

ClaireJG
ClaireJG
in reply to PMRpro

Do you know if it is a reliable antibody test? The UK haven’t been able to access a reliable test yet.

PMRpro
PMRproModerator
in reply to ClaireJG

Yes well - don't get me started there!!!!

S Korea seems to have one that is pretty good - and Italy has bought some of those. There is a Covid-19 version being used in our region but a private company has been offering another which is disputed. The Covid-19 one is not being used on its own here. No test is perfect, there will always be false positives and negatives. and it is something that must be used as part as a wider-reaching assessment.

Sorry Noodat. That does not sound reassuring. Let’s hope they get their act together soon. You take all precautions for you and yours. Hugs! 🌸

I don't think age alone is a qualification. I'm an ex PMR patient off Pred. for more than six years now and I'm 88. No letter.

If anyone knows a way to discover when new Tesco slots are put on line I'd be glad to know. So far that is my only problem as it's easy for me to self isolate

Hidden
HiddenModerator
in reply to BettyE

I have just found a slot at mine..

BettyE
BettyE
in reply to Hidden

Just tried again. No luck. Will keep trying.

Hidden
HiddenModerator
in reply to BettyE

I check about 10 times a day. But at mine it looks like there's only 3 days a week opened up. I tried ringing but they take you through a system of press this....then cut you off. Terrible.

marigoldb
marigoldb
in reply to BettyE

Hello Betty, good to hear from you, and hope you have now got a Tesco slot. I did have the letter, don’t know that it has made any difference, apart from in writing saying I’m vulnerable! As if I didn’t know!!

I’m a little younger than you Betty, just had my 84th birthday, but really missing going out to see family and friends, though on the phone quite a bit to them.

Does any one else find it hard to settle at things? Some days worse than others for me, will flit from one thing to another! Today will be different I say, so here goes, forget the household bits and bobs, enjoy the knitting, the jig saw on the go, and my present book I'm reading, try not to dwell on all the tv negative stuff!

Rain outside, so no sitting out there. Main thing to remember is to count my blessings. Pred down to 2mgs, my open heart surgery 9 months ago successful, and I do have some loving family fairly near.

Have a good day Betty, and everyone as well x

patrees
patrees
in reply to BettyE

Some one said about midnight another suggested 2am !!

BettyE
BettyE
in reply to patrees

Have tried four times today; nothing right up to 8th May. I don't think I can deal with 2.0am. !

Someone at our surgery is now going through all r cords manually trying to identify who needs to go on the vulnerable database. I have been told by the GP that this will include me, but they cannot tell me when I will be put on the database or when I will get evidence of my status that I can give to my employers.

It seems to be yet another complete shambles.

Sorry Ansteynomad but I just had to reply to your last comment. We are in the middle of the first serious pandemic in 100 years and comments such as “yet another complete shambles” are not helpful. Why do you and many other so called experts think this is all so simple when the complexities are way beyond the understanding of the masses. It’s not just front line staff who are working flat out to keep us all safe but also the many who are working 24/7 behind the scenes. Please give the Government a break as they try to achieve the impossible.

I think that needed saying Bobthebuilder3.

These are extraordinary times and like you, I believe that the whole scenario is being as well managed as it possibly can be - far from being a shambles

Peep44
Peep44
in reply to Ansteynomad

I emailed my surgery for some advice whether I would be vulnerable and got told in order to have that question answered I would have to book an over the phone consultation and pay $50 for a 15 minute phone call. Having someone send a letter or contact me will not happen.

I thought there was a possibility I might get the letter but haven’t received it. I also have type 2 diabetes and take blood pressure tablets.

Fortunately I haven’t had one and the only time I go out is for my daily exercise and to the eye clinic for my eye injections.

I think if I had received the letter I would not be able to do that and am relieved my company are paying me for my 12 weeks off without the letter

Hi, I didn’t get a letter but judged myself to be high risk: steroids, age, asthma so I filled in the government form anyway: it seems they then contact the surgery as a couple of weeks later I was Contacted by two supermarkets as being on their vulnerable list. Good luck!

Seraphina56
Seraphina56
in reply to Maisiek

Hi. Can you give a link to the letter please. I’m in the moderate risk group which still apparently means I shouldn’t go to shops. My husband however had the symptoms of the virus so he also couldn’t go out. After self isolating for the required period he eventually went to a local Waitrose but waited 1 and a half hours in the queue to get in and he was still feeling a bit dicky so it was awful for him and by the time he got in he was so exhausted he only got half what we needed.

It’s absolutely impossible to get delivery slots where I live. Like others I know people who are very fit and young going to shops a few times a week and also getting home deliveries.

In my area, north Lancs, my little market town has a wonderful team of volunteers, to do shopping, picking up prescriptions etc. Have you enquired about that in your area. I hate to think of your poor husband waiting all that time. In normal times l always got home exhausted from just a normal shop so l know what he must feel like. Do enquire and good luck.

I meet the criteria (20mg+ for more than four weeks) to be extremely vulnerable/high risk. My status had been confirmed by my GP during a telephone consultation at the beginning of lockdown. I did not receive a letter so I registered as high risk on the government website. I still did not receive a letter but I did receive a text telling me I should contact my GP for a letter. I emailed my GP and within a couple of days I received the letter.

Hope that helps.

Keep well and safe, everyone.

When lockdown was first imposed I was on 40mg of pred, I have not received a letter, I was told this was because I have not yet been seeing a rheumatologist and so not under their radar!! I was the one that informed my Gp that I was high risk!! She wasn’t sure!!!

See what I’m up against😖

Pippah45
Pippah45
in reply to Mjw123

Put yourself on the vulnerable list - via the website - which is apparently what I have done. It's something like gov.uk/vulnerablepeople. I can now access a Tesco delivery much more easily than before (or so I am told) other supermarkets are available but Ts is nearest to me. They said Sainsbury's seems to be doing better than some but my nearest is a long way away so I am not a regular customer. They did ask a few questions including "do you have a neighbour who can shop for you" I don't want to wear neighbourliness too thin so I said NO. After all Tesco should be serving it's regular customers. I don't normally have deliveries but it's my best choice for the things that Lidl doesn't have and I have used Tesco for years and have their credit card. I had this odd phone call at 1pm today (Sunday lunch time?) requesting my DOB so I could get a food parcel. I don't think I want one - I would rather choose what I get and pay for it and allow my parcel to go to someone in real need.

Mjw123
Mjw123
in reply to Pippah45

I will, thanks. I’ve actually got a telephone consultation with gp tomorrow so I’ll mention it to her, it’s more about absence from work than food, I’m lucky enough to have my husband here, he’s working from home. I certainly wouldn’t need the food parcel, like you I’d rather it go to someone else .

I got the letter from the Royal Free Hospital and registered with the government. However I don't think it's brought me any great benefit. Before it arrived I was taking a very early morning walk (before 6 am), just encountering a few dog walkers and joggers. It was easy to step into the road without the risk of being knocked down by a car. I think that walk set me up for the rest of the day and I miss it. Sainsbury's and others tell me that I'm not on the list of vulnerable people provided to them by the government, despite the government telling me that I am. However I have managed reasonably well to obtain groceries and I'm thinking up interesting ways to use up neglected items languishing in my freezer and cupboards.

Hidden
HiddenModerator
in reply to Marijo1951

I get that from Sainsbury's too. Won't even let me in. I was assured that all supermarkets had my details 2 weeks ago. 🙄

Choco-Holic
Choco-Holic
in reply to Hidden

I’m having same problem with Sainsbury’s, no matter how hard I tried this week, however, I got an email from Asda and have now booked a priority slot which can recur at whatever time you choose, weekly, two weekly, monthly. I’d registered with gov.uk two weeks ago, took longer than I thought it would!

Hidden
HiddenModerator
in reply to Choco-Holic

I register the first week and still have no offer of slots....just the usual "priority"....update.

Got a Tesco slot for 8th may...that's not long right?

borednow
borednow
in reply to Hidden

Sainsbury's left me a message to say I'm classed as vulnerable but then won't even let me on their site to book a slot!! Guess who I won't be shopping with when all this is over.

Hidden
HiddenModerator
in reply to borednow

I think a few of us will be changing loyalties.

Telian
Telian
in reply to Hidden

Sainsbury did contact me and I was allowed to register - previously they hadn’t the capacity to allow that - as soon as I asked for a slot a message came up saying saying they’d closed the app as too much traffic and it’s still closed!

I have managed to get ASDA slots though. If you go on around 10pm and a message comes up saying try again later it means they’re putting another days slots on. So keep going in and as soon as they’ve done their techie bit you’ll be the first in line. I’ve tried it twice and it worked each time. They also only book one week ahead so timing is crucial.

Hidden
HiddenModerator
in reply to Telian

It's the new addictive game online... "Supermarket slots" 😉

Telian
Telian
in reply to Hidden

Ha ha! It plays havoc with my wrist though......

PMRpro
PMRproModerator
in reply to Marijo1951

There is no reason not to go for that walk you know - it isn't mandatory. We don't have shielding - just common sense and everyone has to stay at home except for shopping or a walk within 400m of your front door.

Marijo1951
Marijo1951
in reply to PMRpro

Family and friends tell me the same. I suppose I think I'd feel very guilty if I caught the virus and hadn't followed instructions to the letter. The annoying thing is that I think I might have had COVID-19 in January-February - I've certainly never coughed like that before - but there's no chance of being tested for antibodies at present.

Hidden
HiddenModerator
in reply to Marijo1951

That's why testing for c19 and the antibodies is so urgent. Mind you some patients in China were still tested as possible after hospital stays and supposed recovery. 🤯

PMRpro
PMRproModerator
in reply to Marijo1951

If you are 3m away from anyone you meet and don't touch anything and then touch your face then it is next to impossible to catch it! I have no choice - I have to go shopping and then I can't keep a full 3m away.

Marijo1951
Marijo1951
in reply to PMRpro

It would also be a good opportunity to use the face masks that I made for myself. We're all looking for silver linings at present. One of mine is that I seem to have got my sewing mojo back after not touching my sewing machine for 3 years. Mind you, I'm reminded that I'm still not completely rid of PMR. More than 30 minutes and I have to take a long rest and cutting out is particularly draining. I'm keeping it very simple, making shopping bags and aprons as well as the masks. Another silver lining - I've got a lot of my Christmas and birthday presents ready to send later on.

PMRpro
PMRproModerator
in reply to Marijo1951

It seems to be assumed everyone can sew and has a machine here - I used to make my own clothes but my machine is defunct. It cost a fortune and I have never ceased to regret not keeping the ancient one I had had before - it is impossible to get the tension right, even the shop couldn't!

Marijo1951
Marijo1951
in reply to PMRpro

Mine is 45 years old and still going strong.

PMRpro
PMRproModerator
in reply to Marijo1951

Mine would have been 70 years old by now!!! The one that doesn't work is 35 years old!!

Marijo1951
Marijo1951
in reply to PMRpro

I know mine's a baby compared to some. It makes me wonder if my trusty old-fashioned sewing machine repair shop will survive the lockdown - probably not like a lot of small businesses.

My daughter in New York had similar symptoms as well. No chance for her to be tested either.

Ipadmom
Ipadmom
in reply to PMRpro

Memories—. My Singer is 60+ years old. Still working fine. Gave it to a daughter about 3-4 yrs ago.

maria40
maria40
in reply to Marijo1951

I also had a strange bug with all the symptoms in the middle of February. Starting with a dry cough, then feeling generally deathly for ten days then cough moving to chest with lots of wheezing. I went to GP at this point and awareness of Covid 19 was becoming such that I felt I didn't want to be in the waiting room. However, I was reassured that it hadn't affected my lungs. But I'd be very interested to know if I had antibodies though as you say that seems unlikely at the moment.

Telian
Telian
in reply to Marijo1951

Me and my son were the same just before Christmas with the worst cough that lasted for weeks and weeks - feeling so ill couldn’t stand up then a day feeling much better then it all started again. I’d be interested to know the results of a test on both of us.

Cally55
Cally55
in reply to Telian

My husband caught something like that in Cambridge in January 2019, at his retirement drink in the pub we think! It lasted for about a month, cough worse at night. Just as he got better I caught it, again cough worse at night, I went to GP who listened to chest and said OK but gave me antibiotics anyway. However during one bad bout of coughing I fractured 2 vertebrae! I do have osteoporosis, but it took 8 hours in A and E for them to x ray me and believe me. Even then they couldn't prescribe a stronger pain killer. I think there are a lot of nasty viruses out there, and like most colds and flu my immunity to a particular one doesn't last long.

marigoldb
marigoldb
in reply to PMRpro

Is that also if you are one who is told to isolate for 12 weeks?

PMRpro
PMRproModerator
in reply to marigoldb

Sorry - don't understand which of my comments you are referring to?

But if it is the one Poops suggests - if you are in a position to go for a walk and be sure you won't see anyone, why not?

Hidden
HiddenModerator
in reply to PMRpro

I think the one where you day there's no reason not to go for a walk...it's not mandatory. I think.

Hi

I am in Shielding group along with my Mum and Brother none of us received a letter.

It wa phone calls to our Surgery who confirmed this.

Here's an opinion from a New Yorker (I am not a medic), where we'll exceed 225 thousand cases and 15 thousand deaths before the end of the day.

If you are human, you are at high risk of contracting COVID-19. How it effects you will vary depending on a number of factors including age, general health, medical history, medication regimens, and other as yet unknown matters. You might get lucky, and either be asymptomatic, or you might be unlucky and suffer extreme consequences. If you contract the virus, you could spread it to others for 14-28 days, even if you yourself don't even notice you have it.

Don't be a victim and don't be a vector.

Stay at least 6 feet (more than 2 meters) from other people outside your home. If you must go out, wear a mask or other face covering over your nose and mouth. Touch as few surfaces and items as possible. Stay out of small, closed spaces like elevators and stairwells. Stay out of small shops. When you return home, wash everything you wore and everything you brought back with you with soap and water. Wash your hands. Wash any surfaces you touched and any surfaces the items touched. If you wear glasses, clean your glasses. If you get mail or packages, strip off envelopes and outer packaging before bringing items into your home. Wash or disinfect everything. Wash your hands.

Don't do dumb stuff. Now is not the time to play with power tools, lift heavy objects, or take up a new exercise regimen you've been wanting to try. No one needs you to appear in the emergency room. On the other hands, if you have chest pains, severe headache, vision problems, abdominal pain or other unusual symptoms that could turn serious, contact someone for advice. Don't "wait and see" if it will go away. The sooner you address those issues, the better.

Most of all, the best you can do for yourself and your community is to STAY HOME.

I wonder about the "stay out of small shops" - they are the ones we will very soon be able to visit!!

In some countries they have started relaxing lockdown - even if they have multiple new infections and deaths.

I just don't understand it all! We do what we can to stay safe and the governments put us in danger by a still threatening virus.

PMRpro
PMRproModerator
in reply to Constance13

We have predominantly small shops - and you are in there with only 2 others compared to maybe 30 in the large supermarket. Loads of space ...

Constance13
Constance13
in reply to PMRpro

We have only small shops too. In the greengrocers two couldn't stand two metres apart anyway.

PMRpro
PMRproModerator
in reply to Constance13

Then it is 1 in, 1 out ...

Constance13
Constance13
in reply to PMRpro

That happens a lot. We travelled into Soest this morning and the queues outside the chemists and doctors were horrendous.

PMRpro
PMRproModerator
in reply to Constance13

Queue? What's a queue?

Constance13
Constance13
in reply to PMRpro

Two people here - 25 in Soest.😂

PMRpro
PMRproModerator
in reply to Constance13

That'd persaude me to stay at home. Maybe it is like that in Bruneck??????

Constance13
Constance13
in reply to PMRpro

You haven't a choice anyway!!😂😂

PMRpro
PMRproModerator
in reply to Constance13

I did sneak into a supermarket the week before last - apparently I shouldn't have. I was out going to the hospital but shopping on the way back isn't allowed which seems a bit daft.

Constance13
Constance13
in reply to PMRpro

A lot of things "seem a bit daft" at the moment.

Telian
Telian
in reply to Constance13

My son is a butcher and being a small shop it’s one in one out. It’s been like Christmas everyday since this all started - he’s exhausted - and delivers to elderly living alone.

re Small Shops: Call ahead and have them make up your order so you can be in and out in a flash. They may even bring it to the door or curbside for you. (Our notions of what is a "small shop" may vary.)

re Relaxing Lock Downs: Until testing supply and processing is adequate, they are only testing those who are very ill. They are not testing the asymptomatic, nor are they testing those who are mildly ill. They can still spread the virus, though. So can you.

The UK lockdown was extended for 3 weeks yesterday.

People can and will do whatever they want to do, even in the face of danger to themselves and others. Try not to be one of them.

Not me, Miss! I'm a good girl. (In other words I stick to the rules)!😇

Good girl.

PMRpro
PMRproModerator
in reply to GOOD_GRIEF

While that may work in the USA it doesn't work here I'm afraid. I did call the butcher here and he did make up an order - I still had to wait inside to get it and pay, really wasn't much difference. No food shops except farm shops will/can deliver - and they have very restricted choices of their own products.

However - neither Constance nor I are in the UK. Something I suspect we are both rather grateful for at present! I have to say - I wish I was in Germany with her ...

Constance13
Constance13
in reply to PMRpro

The door is open whenever you arrive. The GT on the table waiting.😂💥

PMRpro
PMRproModerator
in reply to Constance13

Excellent - are you able to get it easily at present? Tanquery seems to be put on the shelf one at a time!!! Others have disappeared - bit we have found a delightful Austrian one though ;)

Constance13
Constance13
in reply to PMRpro

Austrian, German, English, etc etc - you name it they've got it. White, of course, but blue, pink, a sort of gold colour.

PMRpro
PMRproModerator
in reply to Constance13

Yes, Sapphire is around - that's blue - don't really like pink, bit sweet for everyday, alright now and again. Haven't seen any other colours though. There is a Suedtirol gin I believe. At a price! Over 40 euros - the Austrian one is 19 euros - that's just acceptable.

Constance13
Constance13
in reply to PMRpro

The cheaper ones are €18 - 22, the more expensive ones €30 - 45.

maria40
maria40
in reply to PMRpro

I've been saying every day I wish I was back in Germany.

I got mine Wednesday . At least it got me a slot for home delivery from the supermarket. It was late coming as I was one of the few who’s letters went astray!!

I did not get a letter but my doctor rang me and told me I am in the high risk group. I don't think a lot of people received letters who should of, a friend of mine who is in her sixties has serious heart condition and has had to contact her consultant to get letter. I know my immune system is not great as I have had a couple of hospital admissions as I was unable to fight off the virus I had without help.

I was sent a letter from the Welsh government saying I needed to shield for 12 weeks, then also one from the English hospital saying exactly the same as my rheumatologist is there as I live on the Welsh/English border. I received both letters on the same day at the end of March. So I would say if you haven’t received one yet you would only need to social distance. Hope this helps.

Got my letter from GP a fortnight ago - I also have Type 2 diabetes as well as Palindromic Rheumatism - though I suspect it is because I am on steroids which will wipe out my adrenal gland function so I my body can't fight diseases.

Hello I had a letter but I only received it from rheumatology nurse when I phoned them ,I’m on prednisalone and methotrexate x

Here’s the link to register as vulnerable:

gov.uk/coronavirus-extremel...

PMR & A-fib, Asthma, post thrombotic syndrome. damaged lung.

I continue to be shamed by my wife who has PMR and type II diabetes, is 65 years old and refuses to give up her front line nursing role.

Then there's my daughter who has moved from cancer screening to intensive care nursing.

three of her colleagues have contracted the virus and one died after contracting the virus last week.

I have tears in my eyes clapping those selfless NHS staff.

I’ve got one.

Hi... no letter, but the dose of prednisolone puts me at risk (I’m on 40mg daily).. so it’s the meds not the Illness.. gp gave me advice to work from home for 12 weeks over the phone...

I had a letter from the rhuematology department two weeks ago with a questionnaire to see if I was at high risk, if you scored 3 or more you should shield for 12 weeks, if you scored 2 you had to practice strict social distancing and you could choose to shield if you wanted to, if you scored 1 then practice strict social distancing. I scored 2 as I'm down to 8.5 mg pred and not taking the metroxathate I was prescribed, if I was taking that then I would be in the most vulnerable category. I've been off work for getting on for 4 weeks now as we had to close the shop because we are a florists and non essential, so I still went for a walk each day and went shopping a couple of times but kept well away from people. But yesterday I received another letter from the nhs saying I was in the at risk category and had to shield, I've also been getting text messages everyday from them with tips about shielding etc, I was a bit confused so rang my gp, he just said if you've had a letter from the nhs then you must be high risk, I wondered if it's because I've been prescribed metroxathate even though I'm not taking it, he said it could be because of my other conditions, but I only have very mild asthma and ulcerative colitis and ibs, on the list of at risk medical conditions it says severe asthma which I havn't got and no mention of ulcerative colitis and ive had that for 30 years and it's well under control, so I am still i little confused, I'm 54 so not in the most vulnerable age group, I'm hoping the weather stays good so I can carry on sorting my garden, I've also started cross stitching again which I havnt done for years and ordered a couple of kits called diamond painting which looks quite fiddly so hopefully it will take up a lot of my time, stay safe everyone x

Hidden
HiddenModerator
in reply to Poppylop

If you get a shielding letter there's a reason but yes probably mxt.

I signed up on the govt website to indicate I'm high risk on immunosuppressants. If I caught this virus it would finish me off easily. I got an email confirming I registered on the site but no letter. I phoned my GP who informs me that some folks have been left off the list - but they could give no reason why. Sainsburys won't recognise me cos they have no govt information about my eligibility and they won't let me sign up for deliveries - never mind give me a slot. Reason given - "because we are giving preference to high risk people". So the system is not only a complete mess, but it actively stops high risk folks from getting food deliveries - ridiculous! I have to depend on church volunteers, and the good will of neighbours to do food shopping for me - volunteers who could be freed up to help more needy folks. You can call it negative or unhelpful comments or whatever you like, but meantime I could be starving to death due to govt interference - I'm sure many people are having trouble getting food deliveries for the same reason - yet there's no shortage of food. Crazy time... :(

Strangely I received the ‘high risk’ letter a couple of days ago when my GP had told me emphatically the week before that I did not qualify as high risk (making me feel a rather stupid hypochondriac ) !

I have mixed feelings about it: helpful for supermarket slots eventually (?), suddenly more claustrophobic, vulnerable and anxious (not helped by husband’s urgent referral to urology).

Hi,

I rang my GP to inform them I qualified for a letter (I was responsible for public health in my local hospital before I retired). I received my letter and then a few emails from Asda etc. But todate no follow up communication by anyone asking do I need help. I think the system is challenged like the rest of the NHS. Take care.

I have had one from central Government, one from Welsh Assembly and one from local Council - feeling the love. I have a weekly phone call from my consultants. Some letters have been sent to wrong address and some have only been sent letters if they are under a consultant in a hospital. Really bit hit or miss. I suppose if you have health issues is just to stay away from everyone. Getting shopping slots is a problem with out a priority letter. Stay safe xx

I have not received a letter, but I am in u. s.

Hidden
HiddenModerator
in reply to Noosat

It's a UK thing. And then not all connected across different countries within the UK..

I have had 2 letters and 2 texts telling me that I am very high risk. I started to self isolate, before i get the letter on 11th March and have only left the house twice and that was to attend the doctors. I left with double masks on, as per doctors recommendation. Luckily I had some in the house.

I had a phone call from my GP on Good Friday to say I was high risk because I’m on 5mg-7.5mg pred. Received text from gov.uk confirming

Hi everyone. Hope you are all safe and well and coping as best as possible . Over 70 and on 7.5preds until end of April then down to 7. Started at 60mg Feb 2019. Now walking without my stick and able to walk 3+ miles sometimes need help from hubby but feel I'm not doing so badly

I had my letter a few weeks ago from my GP. Also letter from hospital and rheumy department. The practice nurse called on Easter Monday, to check that I was coping OK and that I was managing to get shopping and medications. She gave me a volunteer contact number in case my son or online shopping were unavailable. Couldn't ask for better treatment. Everyone has been so helpful.

Keep smiling and enjoy the sunshine

XX

I’m pretty hacked off about this actually. There are 3 high risk people in my house self isolating for 12 weeks and we have heard nothing from the GP or Rheumy and no letter for any of us. I’m ashamed to say that Scotland appear to have been so retarded in providing any database information for passing to supermarkets. It’s a flipping shambles. Called supermarkets every day last week to discuss and could not get any of them on the phone to discuss priority slots. Slots only being given out 7 days at a time and none available at any supermarkets. It’s shocking. What this has taught me is that the folk who stick piled had a point. We are now calling our council for food boxes as we are running out. Utter shambles here. Keep safe everyone.

Hi. I didn’t have a letter either so I rang my GP and she said if you’re on prednisone you should shield ie stay home without going out at all as you are doing. I’ve since read that being on doses of 5 msg to 20 means our immune systems are threatened and we probably won’t be able to fight the virus.

Hope that helps!

I got a text. I phoned the number on the text the next day. The day after that I got a call from the rheumo nurse. Next day a "stay in for 12 weeks" letter arrived. My parents, in their 80s, with health issues got nothing. Illogical. Can my partner sleep in another room and use a different bathroom? Well, no, we don't have those. He goes shopping, is very careful, strips off just inside the front door. Clothes in the wash. Him in the shower.

Add to that, I got 3 calls from the local council, texts from the Gov, NHS and council. Offers of a food parcel from the council. Tesco delivery slot when one was available.

Blood test at the surgery via the staff entrance. Surgery sort of closed.

I have never felt so contacted.

The bungalow has never been so clean and tidy. There are piles of stuff though for the charity shop or Freegle. Decorating nearly done. Garden done. I am expected to stay in. I am knackered with all this work. Go away COVID19 so I can rest elsewhere.

Rene20
Rene20
in reply to Nagswoman

Me too including Tesco! Food parcel hasn't arrived yet from last Wed call!

Need 6weeks blood tests for Methatrxate nurse to come to house.

Only good thing is I did manage to have my diabetic blood test before lock down,

Diabetic nurse phoned last week good news bloods down to 45 lowest ever, diabetes managed by diet alone.

My 80yrs old partner is not going to shops.

Rene

I got a letter in the 2 nd UK wave. If you read the online criteria Steroid patients get the letter.

Hi jules,

Yes I received NHS letter last Tuesday 14th April after vertually self isolating apart from dog walking for last 4 weeks! Apparently at high risk due to taking Methatrxate for Polymyalgia. Very unhappy this letter came in the second tranche.

Methatrxate is immune depressant so compromised immune system.

Wouldn't mind but Methatrxate has little effect on stiffness.

Have spoken to Rheumatologist she advises I should continue with meds at present level 15mg once a week. Will not put me back on prednisolone especially at this time as this would put me at high risk! 12weeks isolation😥😧Rene.

PMRpro
PMRproModerator
in reply to Rene20

Has she taken you off pred altogether? I don't care what rheumies think - mtx may HELP in PMR, it does not replace pred unless what the patient has is really an inflammatory arthritis.

Rene20
Rene20
in reply to PMRpro

Rheumatologist says my inflammation markers are low, she says the pains are not PMR but osteoarthritus, however the stiffness is in the muscles of thighs buttocks neck an shoulders and at times around the rib area of my back if I have been up and about doing chores housework etc.

Very stiff when getting out of bed.

She says I have osteoarthritus is deferred pain from joints, but it is all in muscles not joints.

She says I do not have rheumatoid arthritis.

What is inflammatory arthritis?

Rene.

PMRpro
PMRproModerator
in reply to Rene20

Inflammatory arthritis is just a more general term - it includes RA and several other forms of arthritis where the joints are inflammed and may be damaged as a result. Some of them may present with what is called a polymyalgic onset - with the joint effects only appearing much later, especially with late onset RA (LORA) for example.

However - it isn't HER pain and OA doesn't affect muscles, don't care what she thinks. Right at the start I had a rheumy trying to tell me my knee pain was OA, she could "feel it". It wasn't unlikely, it was a knee I had made a mess of skiing. However, 13 years later a return of that pain led to a knee x-ray, again wondering if it was OA. And there is no sign at all. I would be seeking a doctor who listens to ME - normal range blood markers don't mean it isn't PMR, 1 in 5 patients has markers that don't go high enough to make doctors notice.

Yes I have had a letter

I haven’t had the letter..I thought that I might get one,but having read some of the comments perhaps I am not on enough Pred now to qualify.Been on it for three years and now down to four and a half daily.78 years old and have a history of bronchitus..but not since PMR! (Perhaps it’s the high dose Vit D which helped.)

My daughter has had my husband age 82 and I cocooned since the 5 th of March..she lives next door with her family and has been following the scientific research on the saga since January..I could say it almost became her hobby.(bless her)

All I want is a supermarket delivery ..I have been corresponding with Ocado for the past five weeks without success.Tried at 3 o’clock in the morning even ..

I filled in the govt form as advised but I am not officially listed .I spoke to my surgery as advised,I was told by reception that I wasn’t listed,she didn’t know if I would be listed ,Dr was adding to the list .. I would eventually hear if I was.

The local shops are being brilliant with delivering..farm shop etc..even though I can’t get all that I want I consider myself lucky.

Stay healthy everyone 😊

I ve received one

Hello to all

Writing from Illinois in USA.

Its been awhile since I posted

3 plus years on steroids. Started with PMR

then sarcoidosis with granulomas in lungs.

Anyway, seeing a Sarcoid specialist in Chicago,

who feels I had steroid toxicity, and do have osteoporosis and pre diabetes

She has had me at 2 mg, And want to start plaquenil

Going to hold off on that

She said studies from europe showed no increase in issues for people with sarcoid or low doses of steroid and it could actually help if contract it.

Wondering what you all think.

We are lucky in my state to have a caring governor who is doing his best to keep us safe, as are most.

Stay well

Thanks for the poinsettia Jules. So cheerful and uplifting.

Thank you for all your replies ! I will let you know if I receive the letter. I’m thinking now what it will be like for the high risk when things start to go back to normal. ❤️

No, I haven't, think it must be a bit hit and miss! No one in the flats here has had a letter, age ranges from 60's to into 90's, most have limited mobility, some have carers come in 3 or 4 times a day. My friend got torn off a strip for keep going into town, uses her Zimmer frame and catches the bus, a woman came over from the council specially. I get a phone call every day to make sure I'm alright.

That’s a nice view from your window. Where do you live?

jules1955
jules1955
in reply to VeeWat

Cornwall

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