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Original poster

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

88 replies

Littlemiss74 · 09/04/2020 14:43

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 posts:
Original poster
Littlemiss74 · 09/04/2020 16:54

@mynameiscalypso I am on humira too. When all this started a month ago I emailed my consultant and asked him about it. He said I would be slightly more suppressed than someone else my age (44) not on meds but not greatly suppressed. So I wasn’t too worried. Now I am confused as to whether I can leave the house or not. Surely as long as I don’t get remotely near anyone on my walk it should be ok. My dh is still going to sainsburys so I would have thought that is a greater risk him catching it from there.

OP posts:
mynameiscalypso · 09/04/2020 17:04

My consultant said I was totally fine to leave the house and just to follow the normal guidance around social distancing - he was very reassuring that any increased risk was very minimal.

Hoggleludo · 09/04/2020 17:06

I've heard it's the methotrexate that makes you on the shielding.

Original poster
Littlemiss74 · 09/04/2020 17:08

@mynameiscalypso thank you that is really nice to hear but very confusing isn’t how the advice seems so inconsistent? So you think I’m ok to have a little daily walk then?

OP posts:
mynameiscalypso · 09/04/2020 17:20

Definitely okay to have a daily walk!

Original poster
Littlemiss74 · 09/04/2020 17:24

@mynameiscalypso thank you, just need that to keep me sane 😊

OP posts:
Loopzy · 09/04/2020 17:24

Hi,

My mum has RA and is on 10mg Methotrexate and takes medication for high blood pressure. She hasn't had a shielding letter, so I told her to ring the Drs for advice and was told she wasn't on the list. Since then, they have phoned back and told her that she should be, but won't be sending her a letter out and to phone the council! I thought the letter came from the NHS, not council.

She is still going out for a daily walk, probably longer than she should, but not going to the shops.

Original poster
Littlemiss74 · 09/04/2020 17:28

Oh goodness @Loopzy why on earth did they tell her that! Is she under a rheumatology team/consultant? She would be best to contact them.

OP posts:
Kinsman · 09/04/2020 17:30

I received a letter from my rheumatologist on Saturday telling me to shield for 12 weeks - I am on Sulfasalazine for Sero-negative arthritis but also take steroids for Addisons Disease.

The letter told me to 'stay home, do not go grocery shopping and get your prescriptions delivered.'

I registered with the government website as instructed by the supermarkets and got a text message decline today. Apparently I'm not sick enough.

So in short I am not to leave the house to buy food nor am I allowed to get priority for delivery. I guess the advice is that I should starve. Confused

mynameiscalypso · 09/04/2020 17:30

I should also add that my consultant is the head of rheumatology for one the London NHS trusts so I figure he's pretty clued up!

Original poster
Littlemiss74 · 09/04/2020 17:34

@Kinsman that’s awful. It just adds to the anxiety, I am sorry, I’m not even sure what to suggest🙁

@mynameiscalypso that is very reassuring😊

OP posts:
Loopzy · 09/04/2020 17:39

I have no idea why they told her that. She is under the care of a Rheumatology team, so I have asked her to contact them, so she is...reluctantly. I know she doesn't like being labelled as extremely vulnerable and she thinks we are nagging her and going OTT with things. I wanted her to have a letter for this reason.

It's very confusing when we're all given different information isn't it?

Shosha1 · 09/04/2020 17:43

I have Lupus not RA, but come under the Rheumatologist Dept. My letter was personal and stated that because I take a steroid and two other drugs I am on the shielding group. Oddly one of the other drugs is Plaquinal, the so called wonder drug, that will cure CV!

Original poster
Littlemiss74 · 09/04/2020 17:46

@Shosha1 was your letter from the Rheum dept or did you get the NHS one?

OP posts:
Shosha1 · 09/04/2020 17:49

From the Rheumatologist

QuimJongUn · 09/04/2020 17:50

I have RA but I'm not currently on any meds other than for pain relief - I was on methotrexate but couldn't tolerate it, so it was due to be reviewed. I had a kenalog injection 4 months ago. I've not heard anything, I expect because I'm not on any immunosuppressive meds.

Does anyone know if unmanaged RA puts you at greater risk of complications should you get cv? The information I've found isn't terribly clear, but from what I understand it seems as if the 'cytokine storm' may be more extreme?

FredWinnie · 09/04/2020 17:55

Littlemiss74

Right - I dug the letter out

Was your letter on NHS paper Yes - from my rheumatology Dept

when you received it, was it in the first round of letters? 2nd April, so late arriving.
My 12 weeks starts from the date of receipt

To add, the letter included a flow chart - according to that, if you're on a biologic plus one other immunosuppresive med, you fall into the high risk/shield group

It's bloody confusing information though and not very clearly presented

Jojoanna · 09/04/2020 17:58

I have psoriatic arthritis and take methotrexate, I haven’t had a letter, I’m so confused by what to do

Shosha1 · 09/04/2020 18:02

Mine came on NHS letter head with my NHS number and details only received yesterday. I've been SO for 3 weeks now as knew I was immunosuppressant

Original poster
Littlemiss74 · 09/04/2020 18:02

Thank you @FredWinnie well that is confusing as the same criteria on the BSR website says you are not in the shielding group unless you choose to be! Why can’t they just keep it consistent for everyone!
Will you go out for a little walk do you think or not at all? Will you completely distance yourself from other household members?

OP posts:
JackJackIncredible · 09/04/2020 18:05

I’ve noticed that it’s being on steroids and/or other comorbidities that puts you in the shielding group. You can be on multiple immunosuppressants and not be in the shielding group but steroids seems to increase your risk.

FredWinnie · 09/04/2020 18:17

Littlemiss74

I wonder if it varies from NHS trust to trust?

Will you go out for a little walk do you think or not at all?

My family - lovely bunch and caring and worried a lot for me - have agreed that I can go for a run early early mornings (yay!) but that's all.
They're worried so I won't add to their worries by being careless

Will you completely distance yourself from other household members?

It's only me and DH and he's being so careful, so no. I won't distance from him unless he gets ill with CV
I haven't seen anyone for a while now

According to my NHS trust's flow chart, if you're on methotrexate or a biologic, you're safe with social distancing

If you are allowed to go out and walk, do so!

I'm avoiding shops altogether
No contact with anyone outside the house (except phone etc)
Can't get any delivery slots so DH is being very careful and going to the shop only when necessary
I'm going to have to arrange a blood test soon so I'll ring them and see what the protocol is

I hope some of that is helpful
Do whatever you can to get yourself through this because stress is no good for RA either Flowers

FluffyAragog · 09/04/2020 18:29

I have RA, received a letter from my rheumatology department on around the 25th March I think. I'm on Methotrexate, Leflunomide and have needed steroid treatment for a flare in the last 3 months so I presume that's why I got the letter. But I do think they're being extra cautious just in case, I haven't been out at all but I think a daily walk, taking extra care not to go near anyone and washing hands and changing clothes when you get in would be ok?

Original poster
Littlemiss74 · 09/04/2020 19:36

@FredWinnie thank you, I love your positivity. I think it must vary between trusts as none of us seem to have quite the same advice.

That’s great that you can get out for a run. Exercise where possible is so important but also the fresh air.

I have been feeling quite down and and stressed lately. My DF has been unwell we think with the virus so I’ve been worried sick about him. Then trying work from home whilst my 2 dc’s need help with homeschooling. I have felt run down and you’re so right, stress does make the RA worse.
You sound like such a positive person. I need to try and be more like that. We are all in the same situation so just go to try and find ways to get through it as you say😊

OP posts:
FredWinnie · 09/04/2020 19:57

Littlemiss74

You sound like such a positive person. I need to try and be more like that. We are all in the same situation so just go to try and find ways to get through it as you say😊

Thank you
I hope I didn't come across as a bit finger wagging or anything

Last week I got into a major funk about it all and had this amazing pity party for one Grin
I bored myself to be honest
This week I'm keeping myself occupied

This is difficult for everyone for all reasons

Many Flowers to all the fellow sufferers on here

Hope your DF recovers swiftly