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

[Littlemiss74]

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

Yes you’re right. I’m going to try and think positive. Part of me quite likes the idea of spending time at home having a chance to catch up on things and hopefully enjoy some sunny weather in our garden. Life seems to be going at a slower, simpler pace which makes a nice change.

It is nice to be able to come on mn and find people in similar situations who understand and can support each other. Best wishes to everyone here

I think the advice has evolved as the medical profession has gained more info. I know a medical consultant who also has a form of arthritis who has kept me informed as thinking as developed and it was only 10 days or so that it seems there was an agreed view on risk. The risk assessment tool on versus arthritis is very helpful I think. It obviously depends on your drugs. I am thankfully not higher risk but my sister who has inflammatory arthritis is very high risk and is shielding

Yes the versus arthritis score says I’m a 2 so strict social distancing but not shielding but my letter today suggests shielding so it’s a bit contradictory. I guess things are changing all the time though. They suggested keeping an eye on the websites for the latest info.

Hearhoovesthinkzebras, sorry I didn't mean to sound like I was being off with you, I'm just confused!

Looking at the versus arthritis site, DH would be a 1 - so not on the shielding list at all! But the NHS letter we got was very clear he must shield.

I've had the letter along with a really good flow chart to explain your risk category based on medication you are taking. As I'm on Methotrexate and Imraldi (adalimumab), I've got to shield.

I can take a photo of the flowchart and post it on here if it's useful?

I have RA and am on methotrexate 15mg injection.

Also I'm a nurse working with vulnerable patients. Told by my GP friend who enquired for me that if you're just on methotrexate, that it doesn't put you at higher risk.

@Burpeesshmurpees out of interest was his letter from the NHS or from his hospital?

@beenrumbled this is what I find confusing, especially when the letter I got said if you want to calculate your own risk go that website but then on the next page it basically said all RA patients should shield.. I wonder if they’re just kind of preferring to cover all circumstances by telling everyone the safest option is to shield?

@PhilCornwall1 i’m on the same as you. Do you think you would go out for a little local walk if quiet?

I've taken a pic of the flowchart I was sent from Rheumatology at my hospital if it's of any use to anyone. Not sure if it will zoom on here or not.

@Littlemiss74 Yes, I will go for a walk when it's quiet here, to be honest we have been doing that before I got the letter anyway, as I knew no different.

@PhilCornwall1 that is useful thank you although from what I could see from this is that I fall into the Moderate risk category (strict social distancing) despite being on 2 of the meds in the blue box as I answered no to the questions in the 2nd box. Have I read this correctly? It is hard to see it fully on my phone.

@Littlemiss74 I think you are right, looking at box 2, I've had to say yes to additional treatment for a flare in the last 3 months and I'm also getting recurring cold sores since being on Imraldi. I've got one again and they've put my on antivirals to shift it, as it's a nasty one.

@PhilCornwall1 sorry to hear that, I hope it clears up soon. It’s interesting look at your chart as it even under the Moderate category it says you shouldn’t go outside for exercise. I was talking to my friend about it who has asthma and she said she would go for a walk in her local woods where she sees no one but she wouldn’t go for a walk in a town or city. So I suppose you have to judge the risk really based on your own circumstances don’t you.

@Littlemiss74 we are about 2 miles out of town, so it's not too bad around here. The garden is getting some use though.

Not related to your query, but there was some interesting research showing people with RA on a particular immunity suppressing drug actually do better than others not on it. They are looking into it as a CV treatment. Apparently it's the huge immune response to the virus that causes the lungs to fill with fluid and this drug, which damps this response down, is useful.

One drug being trialled amongst many, but may help a little reassure you

@leafygarden - I think you should check with your RA nurse or consultant.
@goldpartyhat - are you referring to the hydroxochloroquine (spelling??). I used to be on that and was scouring the back of my drugs cabinet to see if I had any left

Yes, I have read something similar @goldpartyhat and, anecdotally, a medic friend said that the most seriously ill people she saw had overactive immune systems which turned in the body so, in theory, immunosuppressants might be helpful. It's certainly been my experience that, since starting an immunosuppressant, I've got less ill than before - in 6 years on Humira, I've had a grand total of two colds I think. That's another reason why I'm quite relaxed about the risks because for me, not for everyone obviously, the impact of immunosuppressants on my immune system seems to be positive overall.

My friend has because she has regular methotrexate. Depends which drugs you are using to treat rather than the illness it's self

To add she only received the letter 2 days ago. I think they are still going out

@Kinsman I've also got Addison's disease. We're high risk. But not shielding. I spoke to my endo

PhilCornwall1

Thanks for the flow chart.
Mine is awful quality and wouldn't photograph at all

According to your chart I'm in the shielding category because I had additional treatment recently
(That bit of info was missing from my flow chart)

It makes sense now, as much as anything can

@FredWinnie I'm glad it's helped. It's one of the best ones I've seen so far that was very clear. Not sure if it was put together by the Rheumatology team at my hospital or it's a standard NHS one, but it's good.

@PhilCornwall1 thank you for that flow chart it’s really helpful.

@Hoggleludo - You're absolutely right. I spoke with my Endocrine nurse and she said that Addison's didn't require shielding but I wondered if was the combination of arthritis and Addison's or maybe it was just an error on the hospital's part.

@Kinsman
Do you take methotrexate?

I've got psoriatic arthritis and psoriasis and I'm on methotrexate. At the moment my conditions are fairly quiet, but earlier this year I was on a month of steroids. I've had absolutely no information from rheumatology or dermatology or my gp at all.

I've been trying to use my common sense and not going to shops, but I feel as though I've fallen into a gap somewhere. Because I'm not shielding we can't get help with supermarket delivery slots. I'm worried about obtaining prescriptions and I'm worried about getting my next set of bloods.