Surviving corona: Lots of us with rheumatoid arthritis... - NRAS

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Surviving corona

mikefox profile image
12 Replies

Lots of us with rheumatoid arthritis must have had covid 19 by now. I wonder if people would like to share their experience. Please mention what RA meds you are on, what advice you were given, how bad you were affected, etc. I'm particularly interested in how quickly our immune systems bounce back after we stop taking meds and if this bounce back is quick enough. There's also a theory that biologics can damp down the cytokine storm that kills some with covid.

Hospital deaths now at 18k, but real figure could be double this (last night's Peston on ITV). Let's say 30k deaths and 1% mortality rate. That means 3 million infected as of about 2 weeks ago (deaths lag behind infections by about a couple of weeks). That equates to 5% of the population (2 weeks ago) having been infected. If approx 700k in UK have RA, 5% is 35k. That's a lot of us.

One slight word of optimism - even if covid eventually kills 60k, that's still only 1 in 1000 of the UK population. Therefore if we take all the necessary precautions, most of us, touch wood, will be ok.

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mikefox profile image
mikefox
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12 Replies
rab1874 profile image
rab1874

Hi Mikefox ,I was on antibiotics 2 weeks ago as they thought I had a chest infection no difference after a week so phoned GP again and she said she thought it was viral and I had all the Covid symptoms except the high temperature ,so as I’m in the shielding group it didn’t matter but as my wife worked in a care home she currently isolating for 2 weeks, I’m Better now except for my breathing which I’m still struggling with and yesterday I got my letter from the hospital and it says if your still suffering symptoms to phone 111, I don’t want to do that but it might be the only way to get tested,catch 2 situation

helixhelix profile image
helixhelix

I thought only about 350,000 people in UK had RA? And remember that RA tends to affect more women than men, and COVID kills more men than women. Not good indicators for you of course, but skews figures.

You might find this summary from international rheumatology alliance interesting:

As of Monday, April 20, we have had 10,369 patients complete the survey.

95% are adults ages 18 or over

5% are children (parents are answering the questions on their child’s behalf)

89% female

Average patient age is 44 years

The most common diseases in our registry are:

Rheumatoid arthritis 25%

Lupus 20%

Sjogren’s syndrome 9%

Psoriatic arthritis 4%

The most common medications taken by our patients include:

Hydroxychloroquine or Plaquenil 21%

Steroids 18%

Methotrexate 14%

TNF inhibitors 9%

There were 511 patients diagnosed with COVID-19, either diagnosed by their physician or self-diagnosed. Their most common symptoms included:

Malaise/fatigue 80%

Cough 72%

Headache 72%

Fever 62%

Fortunately, most patients with rheumatic diseases diagnosed with COVID-19 did not require hospitalization (79%). Of note, 40% of patients diagnosed with COVID-19 were taking hydroxychloroquine/Plaquenil at the time of diagnosis.

Lolabridge profile image
Lolabridge in reply tohelixhelix

Very interesting. I must read the full report. Mikefox has not asked for details of age or gender, which some might not wish to divulge anyway, but could be relevant.

AgedCrone profile image
AgedCrone in reply tohelixhelix

Hydroxy has been blown out of the water...tests showed that more people died who were given it than those who didn’t .....so it isn’t the wonder cure after all!

thelmar profile image
thelmar in reply toAgedCrone

Hopefully we will now be able to get it again. My pharmacist has been trying for a couple of weeks.

mikefox profile image
mikefox in reply tohelixhelix

Thanks. Will look for the report.

Why would you think that? I haven't had Covid19.

AgedCrone profile image
AgedCrone

Many of us with RA will have had Covid19.....just like those who haven’t got RA.....& will have had no symptoms...or such mild symptoms they were ignored. ...so records will probably never show the true picture.

I have had what I presume is Hayfever for the last week or so...but it could be mild Covid...doctor friends tell me you don’t necessarily have every single symptom to test positive.

So unless I get any alarming symptoms.....I’ll just keep taking anti histamines.

mikefox profile image
mikefox in reply toAgedCrone

Do your symptoms vary during the day? If they do it might indicate hayfever. Last couple of weeks have been bad for certain hayfevers. E.g. Oil seed rape, symptoms are worst early evening.

AgedCrone profile image
AgedCrone in reply tomikefox

Oh I know it’s Hayfever.....but I can be allergic to anything....one day this...one day that. At this time of year it is usually anything in the garden......I used always to have a Kenalog injection which helped a lot....but recently my Hayfever has been very mild so I haven’t needed any jabs, but this year apparently pollen counts are the highest in 70 Years....

Years ago I had all the allergy/sensitivity tests and I was told I was violently allergic to Silver Birch trees ....years later I moved into a house on the edge of a forest of Silver Birches & I never sneezed a day there!

I find the worst symptoms are the itchy eyes & throat....I sound like a baritone first thing in the mornings!

I’m staying in at the moment ....so unless I spend a lot if time in the garden....one box of tissues is enough!

BoneyC profile image
BoneyC

Let's hope a reliable, accurate antibody test becomes available to everyone that wants one.

dawkin_S profile image
dawkin_S

I think I had it (GP thought it probably was) but was not sick enough to go to hospital and get tested, so will never know. Took about one week for breathing to get back to normal lying down, then another week or so before I could walk around without getting breathless. Whatever it was, was not much fun, but I guess it could have been any viral chest infection - I've never had that breathless feeling before though. I would love a reliable antibody test to confirm it - I could get back to work apart from anything else!

I'm on methotrexate and hydroxychloroquine btw

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