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

According to that chart, I'd be in the moderate category, but haven't heard from my rheumatologist at all.

I'm on day 10/11 of having covid-19 though, so the info wouldn't help me now anyway.

My chest still really hurts and my temp fluctuates, but I'm only coughing now when I dare to get up and walk a few paces or talk. Both leave me breathless.

Sorry to hear this @Knowhowufeel2 have you stopped taking your RA meds whilst you’ve been unwell? Did you need to spend time in hospital? Wishing you a speedy recovery

Hi again just wanted to ask, if you are shielding what does your DH/DW/partner do about work? My DH is currently furloughed and I’m worried about him having to go back out to work when that ends. But surely his employer will expect him to?

My DH is still working. He works for the local authority. His job involves checking estates, health and safety check lists and referring problems etc. At the moment he's also sanitising door handles, hand rails and intercom systems daily. He's only in work for around 5 hours a day for now. It's a massive worry but he works alone so it's only residents he may come across but makes sure he keeps a distance and he wears gloves. He changes his clothes and washes as soon as he gets in, before he comes near any of us. It's not ideal at all but unless he takes unpaid leave, he has to work.

My dh has RA and had a text from our gp today saying he is in the shielding group so will receive a letter in the next few days.

We did fill in an online quiz thing recently and he came out in the group under shielding as his steroid dose is under their range for shielding but obviously not the same as go opinion...

However he hasn’t been near anybody for weeks, apart from us that is, and I am trying not go near any shops as much as possible.

For those of you that are shielding, are you keeping your distance at home too, ie not sitting near each other, not sharing a bed etc?

For those of you that are shielding, are you keeping your distance at home too, ie not sitting near each other, not sharing a bed etc?

No. I am currently coming to the end of a course of prednisolone- down to 5mg and only 3 days to go. I also inject Imraldi once a fortnight (although for all the good it does I might as well be injecting water)

I wasn't shielding before the letter came out. I continued going in to work until they basically locked the door.Given it took so long for the letter to be issued I'm not inclined to do anything more than the standard social distancing.

Someone I work with , had a lot of dealings with sat close to in meetings had Covid 19 as did her husband. That was weeks ago.

@DidoLamenting i also take Imraldi - do you not find it effective? I switched to it from Humira several months ago, did you? Was told it was basically the same thing just a different (cheaper?)brand.

@Nomorewine77 Sulfasalazine is an Aminosalicylate, it is not an immunosuppressant.

@Littlemiss74 the biosimilars arefine if you're just starting but they're not as effective if you're switched from a biologic to a biosimilar for a lot of people.

Littlemiss74

The Imraldi is useless. This is for Crohn's Disease. The short course of prednisolone was brilliant but after it stopped symptoms started flaring up. They put me back on the short course of prednisolone but said to carry on with the Imraldi- goodness knows why. It was obvious it wasn't working- if anything it made me feel worse. I started to get terrible, non- migraine headaches which didn't respond to painkillers.

The prednisolone runs out in 3 days. I've no idea what will happen then. The hospital took blood and stool samples in the middle of March and again in the middle of April. No- one has been in touch with the results and there is no care plan in place. I was very badly constipated (I think partly caused by being stuck in front of laptop at home rather than if I were at work I'd be moving around more which is why I'm ignoring the shielding advice about not going for walks) To deal with the constipation I've been relying on advice from Crohn's Disease website- which suggests 2 over the counter medications, both of which say on their advice leaflets aren't suitable for Crohn's. I've used them as not using them would be awful.

Littlemiss74

Sorry should have said I was put on prednisolone and then on to Imraldi. This only started at end of last year.

Ok thank you, it seems to work ok for me but I still don’t really know why I was switched to it from Humira. I just got a letter saying it would be switched but it was basically the same and I shouldn’t notice a difference. Can only think it was a cost thing.

It is cost.

www.pharmatimes.com/news/another_humira_biosimilar_hits_eu_shores_1255960

Humira is the single medicine on which hospitals spend the most, at a cost of more than £400 million a year

Adalimumab is the NHS’s biggest spend on a single drug