Happy Easter all, hope everyone is well and safe.
I wonder if any of you can point me to official advice if it exists yet on tapering and shielded status.
I'm currently on 20mg pred and due to taper to 17.5mg on Thursday. This takes me below the shielded status but I'm aware pred has an ongoing affect on immunity. I'm more than happy to err on the side of caution in the absence of advice, just wondered if anyone knew how long after reducing you should remain shielded.
Thankyou all.
I haven't seen anything directly relating to that and I think I have read around a little bit as I am shielded. I don't taper at the moment, especially as I am flaring(!), but if I was successfully tapering I would continue to do so. Going down if symptomless shodnt be an issue I wouldn't have thought But someone may have clearer info.
Just checked your profile. Are you sure you are ready for a taper if only dx in march or am I misunderstanding?
Hi Poopydoopy.
Sorry you are flaring, hope it settles soon.
It's been a bit rocky, started pred in January and had to rapid taper off to get PET-CT for final diagnosis- painful and tiring! Have been on 20mg now for 4 weeks on Thursday and doing ok. I'm happy to try the taper but am also willing to bang it back up if the pain returns and my Rheumatologist agrees (she is fantastic)
Having dropped from 15mg, to 10mg to 5mg in fairly fast time I'm reasonably confident I can do 17.5mg and I will stay shielded until more confident of the advice.
I had forgotten you had endured that torture!!! I think you need to take it steady but have to suck it and see sometimes. 🌻
Oh it's awful.. I feel for any one who has to do it.
I do feel more confident having done that fast taper. I know what to expect which is helpful and I'm hoping a slower one will be manageable.
🙂
It is less what today's dose is but more your history: you have been at above 5mg for more than a few months so there is the adrenal function risk. PMR itself puts you at increased risk, the history of pred dose adds a level. Do you have any other co-morbidities?
Hi PMRpro
I just have an underactive thyroid and am taking HRT. Absolutely fine otherwise.
I think caution is the best approach, we won't ever regret that whereas you could regret not taking it seriously.
Thank you
Quite 
Tapering isn’t the first step after diagnosis. I was on my 20 mgs for 6 weeks enjoying the blessed relief and allowing months long inflammation to be properly extinguished. Then I dropped 2.5 with not much bother. Good luck! This is a study in intuition and above all, patience. Keep well! 🌼
Oh it is a blessed relief isn't it. 🙂🙂.
It will be 4 weeks on 20mg so I'm hopeful it will go smoothly. If not, I'll up it again for a while longer.
Stay safe and well
Hi I’m tapering too and now down to 9mg. Thought I was exempt from shielding at this dose but no luck . Got my letter on Saturday .
Just down from 10mg to 9mg and tiredness kicking in . Hoping this will pass . Not sure of the guidelines sorry .
Best of luck with it. I hope you feel better soon.
Having done a fast taper to get diagnosis I'm really hoping the slower one is easier than that was but I'll only know when I get going. 🙂🙂
Hi there,
I've been tapering from 15 through 12.5 to 10 (via an unofficial 11.25 - 2 x 5s, and half a 2.5 lol) ... but I've not had a letter yet ... so i can't get the reserved supermarket delivery slots which is making life a little bit difficult ...
can you give any tips on how to get 'the letter'. I did the self registration thing on the website posted on here and I had a reply a few days ago from the Goverment via a text, saying that if I'd not had a letter yet, to phone my Gp ... I did, but could only speak to reception who didn't know, but put me on hold while they checked and then came back with the story that they have not been given any advice from the government yet as to what they should be doing?,! She admired several people had called within he same query but as yet they don't know what to do ...She suggested I call back next week if I've still not had one ... as they might have some info by then?!?
Hi sorry can’t give you any tips. The letter came unexpectedly. I was in hospital a few weeks ago with an attack of fast Atrial fibrillation and the consultant then said I should be in the shielding group so not sure if it came from there. I believe the assessments are done by your medical records .. either hospital or GP, although when I called my GP he seemed to think the cut off for prednisolone was 15mg. I can only think it is my co morbidities (over 7O , hypertension and AF )along with the steroid that had put me in the group. I would give your GP a ring to clarify your position .
PMR itself if increased risk, over 70 adds a level, hypertension another - they are for management if you did get it, the pred increases the risk that you could get it.
Sorry me neither. I haven't had a letter either but I had a telephone consultation with rheumy who advised me of shielded status when I had to go up to 20mg.
GP not helpful either and I don't think they can keep up with the quick dosage changes either.
Because you have registered with the government means that the main supermarkets will get your details and should allow you book deliveries and ones such as Sainsbury's and iceland will give you priority. It's stilI hard to get slots but keep checking and they do appear. You may need to register with Sainsbury's over the phone as well and it takes around a week to 10 days.
Best of luck.
I thought that by registering I would get into the supermarket lists but alas no ... at least not yet... I’m still being rejected by Sainsbury as they’ve not received anything ... yet. I’m not starving as I do have plenty ‘storecupboard’ supplies but it’s more fresh food that I want to keep getting. I managed to get a click & collect at Tesco last week and a friend picked it up - but I can’t rely on that too often as they are working and not always available - in extremis I would go for a click and collect if I had to but it’s so hard to get a slot ... I have a telephone appointment with my GP on Thursday this week so hopefully she will be able to help with ‘the letter’ 🤞
It did take some time, hopefully sainsbirys will be in touch soon. I got a text from them.
If you're on FB, there lots of small independents doing delieveries now as well, might be worth seeing whats around in your area.
Me too with Sainsbury's and I was shielded on day 1 by text and letter, called by outsourced company and was told I was a top priority person for all supermarkets and pharmacy and had social services ringing me. Still no sainsBury contact. I can't even get the number as i end up in circles on the website when I try there emergency contact for covid. 😱
That’s got to be incredibly frustrating for you. Have you tried Asda, and Iceland who have been mentioned on here by others - i never have thought about Iceland ...
Still no slots available. Hopefully I will drop on one. I have got a Tesco slot on the 24th. That may see me to June except for milk etc.. but at least I have one.
I don’t drink milk but my husband does - he’s really fussy and won’t drink long life milk, but he does freeze fresh semi skimmed milk and says once thawed it’s better/ nicer than long life?. I can’t vouch for it as I think the whole thing is pretty gross, and I don't know if that’s any help to you at all? We buy the semi skimmed ones and he takes a little out the (plastic) bottle first then squeezes the extra bit of air out so there’s expansion room in the bottle and freezes it - or sometimes if he’s just finishing one, he uses the old (well washed) empty bottle and puts half in that to freeze and keeps half in the new one to use first ... might be worth trying so you have some extra to tide you over between deliveries - but if it’s horrible (which it might well be?) please don’t come beating me up, lol ...
I can understand your husband. I drink a lot of milk but 'never' long life.
I haven’t had a government letter but hubby and son have! I did get a text letter from Rheumie though I also take a cancer drug plus had a flare in the last three months even though down to 10mg. No way am I going out anyway plus my other two are at risk too.
Regarding supermarkets some are better than others. Sainsbury’s not taking new registrations until they get gov letter! Was able to register with Asda and advised to include if you were over 70 and underlying conditions. No slots at all. Waitrose booked until July!!!
Tesco’s - had to call them for something else, only waited 10 mins, and enquired about priority slots and had they had the gov list. They hadn’t but said you can register now. Needless to say I have a delivery today plus took advantage of one yesterday as received an email last week saying they were delivering for the vulnerable only on Easter Sunday and to choose a slot. So Tesco’s coming up trumps. Try to register direct they will instruct you what to do afterwards.
Good luck.
I even got a big complimentary Easter Egg from Tesco as a thank you!
I rang my GP last week and was told that a second tier of letters for high risk patients was being sent out but I haven't had anything yet. I had the same text as you from Gov.uk. I'm sure I should be in this group as I'm 79, taken steroids for 20 years, am currently on a dose of 12.5 Pred, reducing from 15 following a GCA flare in December. I also have SVT, and have been warned about recurring kidney stones.
I'll ring the GP tomorrow if nothing comes by then.
Just by luck I did get an Iceland delivery slot for tomorrow; they don't have everything but will be better than nothing. My daughter will go shopping for me but I don't like the idea of her going to supermarkets too often at present.
It’s frustrating isnt it!?! I guess the machinations of government as always are going to grind exceedingly slow, and we have to be patient but it’s pretty stressful while waiting ... I feel for you - we are lucky and do have a couple of friends who have offered to pick up a click and Collect order if we get one, but a full shop is time consuming for those who are still working (and learning to cook ‘from scratch’ lol) and we don’t want to push the boundaries. We will all hopefully get there in the end... If you do get desperate, one of my replies on the government thing said you can re register as needing a food package and then contact your local council to have one of them delivered if you do t get a government reply immediately. They don’t sound very appetising by all accounts, but in extremis would be better than nothing ??
I understand that Morrisons are doing basic food boxes (3 kinds) even in areas where they don't usually deliver which could be helpful
Thanks, That’s really useful info 😃 and I guess its definitely worth checking out for lots of people if they are in seriously dire straits, so it’s good to hear that Morrisons are stepping up ... but I did see a post from someone (I think it was on here?) who had actually received a government ‘food box’ and tbh, unless you were literally starving, it didn’t sound like the kind of thing a lot of us relatively health conscious people would want to eat- if given the luxury of choice - it was apparently white sliced bread, white pasta, mostly simple carbs, with some kind of (processed?)meat and cheese? ... I can’t remember exactly what else, but the lady who received it said she couldn’t/wouldn’t eat most Or any of it, and would be giving it away to someone who could use it to save wasting It. She was looking for help to Try to cancel the next one... as she couldn’t find out how to contact them- I just remember that I couldn’t see anything at all she mentioned in it that I could/ would be able eat either...
On my fairly restrictive OMS dietary program (which is medicinal as opposed to a fad diet)and is so far successfully controlling my MS, I’m by necessity, meat, dairy & processed food free, although I can eat fresh fish and seafood - but also I’m only supposed to eat wholefood, ie whole grains, and brown rice etc, not standard white mega processed stuff - but even more awkwardly, nothing containing or cooked in oil - (I can only use extra virgin cold pressed olive or flax oil) - which is really limiting as virtually all processed food has those things in, so these generic packs wouldn’t be any use to me either ... luckily I’ve already got lots of organice brown basmati & other brown rice in the house & still got some alternative and wholemeal pastas and whole oats, bulgar, quinoa etc so I’m ok for carbs at the moment - as well as a reasonable amount of fish and seafood in the freezer for now, so it’s the fresh fruit and veg thats my big challenge - and salad things - oh, and fresh meat & chicken for the hubby 😁 ... Hey ho, we’ll muddle through as best we can and improvise where necessary - and maybe this will focus us on the fact that until this hit us (I’m talking about myself now ) we’ve taken easy food choices, medication etc for granted and now we’re having a very small taste of how a huge percentage of the global population struggle for what we consider necessities - A humbling experience- so sorry for this rant - I’ve been partaking of an overly generous serving of our stockpiled wine this evening, so please accept my apologies for the garrulousness of this long ramble 😊.
Sorry!!!!
Stay safe everyone!
I still have my mother's cook book that she bought during the war. Lots of ideas there. There's another one I know - I think it was called "We'll eat again". Perhaps some helpful printer will re-print it!?!
Hi Could you tell me the website you went to please for self registration xx
I got the link on here - several people have posted it a few days ago but I can’t remember who? Maybe it’s in the pinned posts? I’ll try to find it for you shortly and hopefully repost soon ... when you do register it takes a few days then you get a text acknowledgement from them.
Thank you 😊
Hi carolBF
gov.uk/coronavirus-extremel....
I think/hope this is the right link? There is an option halfway through where you can select that you need assistance with getting food or not. I put not (as I don’t think I’d be able to use their ‘parcel’ and am not in that position anyway) and it still lets you register which is the bit that I’m hoping will get me into the supermarket priority delivery lists? So far no joy but patience is a virtue right?!?😃
It does allow you priority orders supposedly but then getting a slot is just as difficult as ever 🥴🙄
Than in you
My sister got the letter last week and she is on 8mg which is less than I am on at 12.5 and we both have PMR and GCA no letter for me yet!
I got a Tesco delivery by going online at about 6.50 am yesterday. (Sunday).
My GP told me that they hadn’t been involved with selection of shielded patients, they weren’t given a list for a long time, just told there were 121 from their surgery. He was trying to find out how to add and delete people from the list, but getting no instructions. Sorry, not what you want to hear, I’m sure. There were other posts about it a couple of weeks ago & there’s a pinned post from Cambridge hospital from which you can work out if officially shielded. I wouldn’t be shielded from PMR on its own, but I suffer from repeated chest infections & other stuff, too, which makes me shielded. Good luck, S x
Status update and Travel/taper question.
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GCA Flare~~ status and explanations💞
