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Anyone with RA? Have you had a letter about shielding?

(89 Posts)
Littlemiss74 Thu 09-Apr-20 14:43:06

Today I got a letter from my rheumatology dept at the hospital. It basically said if you take these drugs (from a list) they suggest shielding.
Enclosed was a copy of the NHS letter sent to people who have been contacted about shielding. This was a generic letter and did not have my name on it - they sent it for information.

Then they said you can go to a website and answer some questions which calculate your risk. I did this and my score said I should strictly social distance but my score didn’t put me in the shielding category.

I feel a bit confused now. I mean I guess they are saying basically to be extra safe they recommend shielding but not to the point that I was on the NHS original letter list.. I haven’t been anywhere for 3 weeks except for a short walk around our local country paths each day. This has kept me mentally stable and I would like to continue but now I’m even
more anxious after the letter. Worried about DH going to supermarket and eventually back to work. I’m just so anxious🙁

Would love to hear from anyone else with RA to see what you think/are doing? Thank you

OP’s posts: |
Nomorewine77 Thu 09-Apr-20 15:14:20

I have RA and haven't received a letter. I take Sulfasalazine only at the moment and from what I can gather taking certain drugs/ combination of can put you more or less at risk I believe?! I have been on a number of arthritis websites and some don't class Sulfasalazine as an immunosuppressent at all! I'm being sensible and following the social distancing rules and staying at home and only doing essential trips ( and walking my dogs )

Suebnm Thu 09-Apr-20 15:29:25

I have sero positive RA and take suphsalazine, hydroxychloroquine, methotrexate and regular steroids not just for a flare. My Rheumatolgy department phoned me and told me to shield and then I had a letter from the government to shield. I am shielding but not from my husband as I have no legs I cannot. Pre covid I also had carers but I’m too high risk now.

FredWinnie Thu 09-Apr-20 15:33:18

Hi OP
I have RA and I'm on two immuno suppressants
I did receive the 12 week letter with my name on it, so not just advisory

As the PP pointed out, the letter outlined that certain drug combinations make you more at risk
That's why I got the letter

From what your letter says, it sounds like you can still do your regular exercise

Littlemiss74 Thu 09-Apr-20 15:41:59

@FredWinnie I am also on 2 immunosuppressants. Was your letter on NHS paper - do you mind me asking when you received it, was it in the first round of letters?
It seems to be slightly inconsistent. I’m not planning on going anywhere but I do really benefit from my evening stroll across the field.

OP’s posts: |
Hearhoovesthinkzebras Thu 09-Apr-20 15:46:27

It's the type of immunosuppressant plus co morbidities that trigger the shielding though.

I have inflammatory arthritis ( though not RA), and take two immunosuppressants but in my case it was the co morbidities that put me into the"shielded" category.

Littlemiss74 Thu 09-Apr-20 15:52:23

@Hearhoovesthinkzebras I read exactly that too. I don’t have co morbidities so I thought I wouldn’t get a letter despite being on the 2 meds.

OP’s posts: |
DreamingofSunshine Thu 09-Apr-20 15:54:12

I'm seronegative RA on methotrexate and hydroxychloriquine. GP said I'm increased risk but going by the British Society of Rheumatology I'm not in the shielding category. I'm 33 if that helps.

Knowhowufeel2 Thu 09-Apr-20 15:55:45

I'm on etanercept and have sero positive RA and chronic pain as well as osteoarthritis in my spine. I've heard nothing, but I'm now isolating because I contracted covid-19 10 days ago.

GoudaGirl Thu 09-Apr-20 15:56:34

Husband has RA was not originally on for some reason until his GP intervened- he is on an immunosuppressant plus already had a hospital admission last year for severe lung issues. I also know of another RA patient who hasn't had a letter and is on methotrexate.
I would see if you could speak to your GP to allay fears.

Littlemiss74 Thu 09-Apr-20 15:58:58

I’ve looked at all these different places and feel it’s a bit inconsistent. When I checked my risk rating on versusarthritis.co.uk as suggested I came out in need to strictly distance but not shield category. I’m wondering if the letter I got from the rheumy dept is a standard letter that went to all patients.

OP’s posts: |
Hearhoovesthinkzebras Thu 09-Apr-20 16:00:56

But you didn't get a letter did you? Sorry if I've misunderstood.

I did get a letter but I also got an email from the rheumatology department explaining that some people have been missed so to double-check the criteria and if you are in the shielded group to contact them.

I read it as if you aren't in the shielded group then you are in the vulnerable group and to follow those guidelines which do permit you to go for a walk. So if you don't score three points to put you in the shielded group then you can still go for a daily walk.

Hearhoovesthinkzebras Thu 09-Apr-20 16:03:06

The shielding letter that I got was addressed to me and included my name and hospital number, if that helps.

It wasn't a "Dear patient" letter.

FredWinnie Thu 09-Apr-20 16:05:35

Littlemiss74

I don't mind at all. I'll dig it out and get back to you to try and answer the questions I can't answer right now smile

I received mine 2nd April

AFAIK I'm on full lockdown because both my RA drugs can cause respiratory issues (side effects)

To be honest, as anyone with RA knows, staying as mobile as humanly possible is vital to keep RA under control.

Your stroll across the field will be just as important to your well being and it sounds like you're being super careful

I had to ditch the couch to 5K but there are loads of good youtubes on low impact exercises

I'm in my fifties, if that makes it a bit clearer.

Will get back to you

Littlemiss74 Thu 09-Apr-20 16:07:18

@Hearhoovesthinkzebras I got a letter today but it was from the rheumatology team at my hospital. It was addressed to me but it was a standard letter that said if you take any of these meds from a list they would ‘suggest’ you shield. My two were on the list.
They also included a copy of the NHS letter (but this was not addressed to me, name and address bit was blank). They included this to give more info on how to shield.

Then the letter said to check your points on score on versusarthritis so I did that and as my score was 2 so it said no need to fully shield but be extra cautious.
Is this the same place you went to to double check the criteria - where did you get your score from?

OP’s posts: |
aWeaponCalledtheWord Thu 09-Apr-20 16:09:26

i have psoriatic arthritis and take
methotrexate. my shielding letter was from the NHS with all my details on and not generic. i do have other medical issues which might have contributed to me being shielded rather than vulnerable.

the letter though makes it very clear that i am strongly advised to avoid all contact for 12 weeks from the date of the letter. there’s no room for confusion.

hope you get it sorted.

Hearhoovesthinkzebras Thu 09-Apr-20 16:14:16

I had an email from the rheumatology department which contained the criteria from the British Society of Rheumatology. That listed the drugs that automatically put you into the shielded category and then other criteria which when combined put you into the shielded group. That also had a generic "Dear Patient" shielding letter.

But prior to that I received a letter containing all of my details, so name, NHS number etc on NHS headed paper, telling me that I was in the very high risk group and explaining how to shield and how to register for help with shopping etc.

beenrumbled Thu 09-Apr-20 16:21:21

DH has PSA and has just got his shielding letter from the NHS this morning - He is on sulfasalazine (can't tolerate methotrexate)

Hearhoovesthinkzebras Thu 09-Apr-20 16:23:47

DH has PSA and has just got his shielding letter from the NHS this morning - He is on sulfasalazine (can't tolerate methotrexate)

Which is even more confusing because society of rheumatologists discount sulfasalazine completely. According to them if that's all you are on you just practice social distancing. There really doesn't seem to be a cohesive plan here at all.

Littlemiss74 Thu 09-Apr-20 16:26:04

Thanks Hearhooves. So looking at the BSR website this is me and it falls under the category one below shielding:

Well-controlled patients with minimal disease activity and no co-morbidities on a single agent broad spectrum immunosuppressive medication* at standard dose (e.g. Methotrexate up to 25mg per week) plus single biologic (eg anti-TNF or JAKi)** or *

My letter from the hospital says ‘for some patients our advice will be slightly stricter than the BSR recommendations as we feel it is best to be as cautious as possible’. But it doesn’t make it clear if that means me or not...I would call them but my consultant is now on holiday!

To be honest I’m tempted to still go for my local
walk and just walk on the other side of the road if I seen anyone coming! As @FredWinnie
said keeping active if possible is important as well as my mental health.

OP’s posts: |
beenrumbled Thu 09-Apr-20 16:31:39

Hearhoovesthinkzebras, the only other medication he is on is for slightly raised BP, so it has to be the sulfazalazine.

Hearhoovesthinkzebras Thu 09-Apr-20 16:36:44

beenrumbled

I'm not doubting you, I just think it's ridiculous that the advice is varying so much.

DreamingofSunshine Thu 09-Apr-20 16:37:12

That's the approach I'm taking, I'm.not going to the supermarket etc but one walk a day to keep moving is really important for my physical and mental health.

TheHobbitMum Thu 09-Apr-20 16:38:11

I have RA and have had a shielding letter (addressed to me with my NHS number included and not the generic one), my main RA treatment medications are

Etanercept (biologics)
Sulfasalazine
Leflunamide
Hydroxychloroquine
High Blood Pressure tablets
Naproxen

My rheumy said its the biologic that makes me in the shielding category not any of the others confused It does seem like there are mixed messages for everyone

BadgerButty Thu 09-Apr-20 16:42:36

I’ve got psoriatic arthritis and take just etanercept at the moment. I haven’t had a letter yet, despite being borderline type 2 diabetic which I’m guessing would be a co-morbidity? I’ve been erring on the side of caution and plan on staying at home for 12 weeks if possible with a daily short walk to keep as mobile as I can . I’ve got my last online food delivery slot booked for this Sat and if I can’t get anymore I will have to venture out at some point. It is hard to know what to do. According to the BSR thing on the versus arthritis site I score 2 so just need to stringently social distance. I’m mid 40s btw.

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