Social distancing : I have RA and am injecting 20mg of... - NRAS

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Social distancing

Masosa profile image
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I have RA and am injecting 20mg of methotrexate once weekly and taking folic acid on the other 6 days. I know that I’m at moderate risk, but am not sure of the social distancing advice. Gave blood at the doctors’ on Thursday, was told he’d phone me later that day. He didn’t.

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Masosa profile image
Masosa
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Boxerlady profile image
Boxerlady

I think that you're likely to get numerous different responses to this as the advice has been very unclear and often contradictory. 😕 I was on the same meds as you (plus Hydroxchloroquine) and I was told to shield by both the rheumy clinic and the GP but I decided to strictly social distance. Others on here who clearly should have been told to shield haven't... It's a complete mess, I'm afraid.

Masosa profile image
Masosa in reply to Boxerlady

Thank you, Boxerlady.

Yes, “mess” is one word to describe it.

Clear as mud, another.

I won’t add anymore for fear of being excluded!

AgedCrone profile image
AgedCrone in reply to Boxerlady

It’s that darned old common sense that gets us through ...isn’t it BL?

Boxerlady profile image
Boxerlady in reply to AgedCrone

Indeed. After all, all this "advice" is based on uncertainties. Sadly they'll only really know what level of risk anyone is dealing with in retrospect, once all the figures have been collected. At the end of the day, we each have to do what feels right for us personally.

AgedCrone profile image
AgedCrone in reply to Boxerlady

Spot on....we are intelligent adults and I for one certainly don’t need a letter to tell me I shouldn’t go swanning around Tesco’s on a packed Friday afternoon! But midweek, mid afternoon sporting my suffocating mask....I’ll give it a go!

I don’t want or need freebies to keep me safe......just a bit of careful thought & initiative would not go amiss though.

Lolabridge profile image
Lolabridge

Hi Masoa.

The advice you should be given also depends on other factors than just what meds you are on. Other diseases and health issues may increase your risk. Perhaps your GP wants to wait to see your blood test results before contacting you.

The gov.uk website has the current advice and how it will change from July 4th. Here's a link: gov.uk/government/publicati...

Masosa profile image
Masosa in reply to Lolabridge

Thank you, Lolabridge.

The advice you gave and the link that you sent was very helpful.

AgedCrone profile image
AgedCrone

Probably he would only telephone you once he had the results of your blood test ......which would take at least 24 hours ....so maybe he will phone you on Monday?

If not why not call the surgery and ask if your blood test results are back.

dawkin_S profile image
dawkin_S

Hi Maosa, I am also on 20mg methotrexate, plus hydroxychloroquine. The advice has all been a bit of a mess as everyone has said. :)

Here's what I worked out, hope it helps - this is just what I pieced together for me, of course:

1) Being on just one immunosuppresive drug (methotrexate) with no co-morbidities puts me in the 'middle' risk category according to this table by the British Society for Rheumatology: rheumatology.org.uk/Portals...

As you can see, the advice is "Social distancing/self-isolation at patient's discretion"

2) As I still have flares, and had a 'moderate disease activity' score at my last rheumatology appointment, I have erred on the side of caution and chose the self-isolation option in this category, so no trips to shops, etc.

3) My GP agreed that would put me in the 'clinically vulnerable' category - (*not* clinically extremely vulnerable, that's the shielding category), so minimum I should do is strict social distancing.

With all that in mind, I intend to keep up the two meter rule when I do have to go out (eg two trips to doctor this week), unless in a situation with 'mitigation' ie, wearing a mask, protective screens up at tills etc.

As others have said, ultimately the decision is yours. However if, like me, you are working or facing the prospect of a return to work, it might be good to get some clarity from the GP/rheumatology as if you are in the 'clinically vulnerable' group, your employer has to make certain accomodations for you (in theory) to minimise your level of risk.

Masosa profile image
Masosa in reply to dawkin_S

Thanks, dawkin-S.

As you say, they seem to be leaving things to individual discretion and, as others have said, common sense plays a big part.

A lot of the problems occur because, unfortunately, not everybody is employing consideration for others, which gets a bit frustrating.

Hi masosa

My Rheumy wrote to me asking me to shield.

When my GP said to only socially distance I explained how rheumatology had come to the decision. GP replied we don't use that method 🙄.

Then gp changed their minds told me to shield then Rheumy said not to.

Then Rheumy changed their minds. I kid you not.

I shielded myself from 17th march, the day after I got back from holiday.

My shielding was based on me being :

1.on 2 immunosuppressants and 2.being in a flare and 3.having a recent infection and 4.recent steroids.

It's complicated!

vonniesims profile image
vonniesims

I have been shielding as advised by Rheumatology and the gov.

Had a home visit for my bloods 3 months ago,and now I have contacted my Gp for more bloods they have replied saying I an not on the shielding category. They even rang me a couple of months ago to see if I was alright Shielding!

I don't think that sometimes the drugs prescribed by the hosp and delivered to the house come up on their computor.

I’ve been confused from day one! I’m on 10mg. When they were scoring I scored 1 so low risk, then the table was updated and I was in the middle. Rang the hospital, they were still using the scoring system so still said I was low risk but higher than the average person. I’m fairly youngish, healthy and haven’t had a flare up in a long time so made the decision myself, after 5 weeks off, to go back to work in April every other week as I can’t work from home. I’ve been mitigating the risk myself by driving into London instead of public transport and our building is at 50% capacity to take into account social distancing. But I’m constantly having to remind people about it! It’s all been a bit of a cluster.

193639 profile image
193639

Hi Masosa,

I also take mtx amongst other meds and I would remain cautious in relation to social distancing. There is no-one providing definitive advice on your concern and I will continue to take Scotland’s First Ministers advice and see what happens on 31st July.

In England the Government appear to be less cautious in my opinion with the Economy now top priority.

Regarding your bloods, your GP would only re-call you if there was a problem, therefore no call back probably means your bloods are fine. I don’t know how long you’ve been taking mtx but the taking of your bloods will decrease as time progresses. Initially it was every 2 weeks, then 4, then 8 and so on,the longer things go well I now get my bloods taken every 12 weeks.

Take care and stay safe

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