Has anyone with Lupus had Covid?: I was just... - LUPUS UK

LUPUS UK

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Has anyone with Lupus had Covid?

Jolevans
Jolevans

I was just wondering how unwell people were if they contracted Covid.

I’ve had a few scares as I have asthma and when it gets bad and I contact the Dr they imply I have Covid. But all I really need is a stronger inhaler which has been really difficult with all the side effects.

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Hi does your surgery have a asthma nurse or do you have a community respiratory care team you can contact? I have seretide, atrovent and salbutamol inhalers as well as ipatropium,salbutamol and hypertonic saline nebulizers at home. Sorry cant help on the covid front but my breathing has worse recently due to the change in weather.kind regards xxx

Hi, yes there is an asthma clinic and have been very good with regular phone calls whilst trying several different inhalers niece I convinced them it’s not Covid. It all started in March. They even sent an ambulance at one stage but hours later the paramedic phoned and I was a lot better so it was cancelled.

Keep pestering is all I can suggest x

I would try again. It is not pleasant to be struggling and with covid we need to have our symptoms well controlled. My asthma has been worse and I was able to be swapped to a more effective inhaler. Good luck, Lou xx

Hi,

“...and I contact the Dr they imply I have Covid. ..”

😱🥶

We lupus sufferers cannot and should NOT have doctors scaremonger us lupus sufferers that we have Covid-19 when we have not been TESTED?!

Totally unacceptable to say this without a positive test...

Keep challenging, keep questioning, keep safe!

Xx

Jolevans
Jolevans in reply to Newby12

I thoroughly agree with you there! I flag up on their system due to Asthma, Lupus and being on steroids so they just assume.

For them to assume, is not science based! At early stages and in most cases of uncomplicated flu and COVID, it is impossible to tell the difference without a test.

Prior to COVID, doctors generally can distinguish between viral syndrome and bacterial by behavior, and every season there is flu, of which they can test but usually don’t once they know what strains are floating around, they assume by symptoms of flu.😷 However, this year, this will be difficult, because the symptoms are so similar in so many cases, the only way you would know is if you had a flu jab or were tested and had a positive test for one or the other. This is not a financially feasible situation (guessing 🤔) so they go the way of the least common denominator, knowing that most people will take them at their word and fall in line. Their condition will either get better or it won’t and they will either come back or they won’t. “No harm, no foul.(?)” Unfortunately, there are the complex patients who really need oversight who are lost in the melee.

D🏃🏽‍♀️

Please contact your dr. Covid goes for the chest and you need to have the right resources. I also think you would know if you had Covid, the cough is different to any other and you would feel ill. You need treatment for the conditions you already have. Not every cough is Covid. You need this treatment to protect you from it.

I had Covid in April, caught it just as shielding started. It was initially mild just a constant cough and chills. The cough was not bad as no pain or phlegm. But then had the day 12 resurgence which was all in my chest and difficulty breathing And chats to 111. I have never had chest issues so can imagine it would be much worse if you did. I then recovered and felt brilliant. Thankfully, my Lupus did not join in.

Sadly, I have then had fortnightly relapses. These are like Lupus flares - it’s a bit like having Lupus twice. Yay! Many symptoms overlap but thankfully, not as bad as when my Lupus goes.

In August I was run down and tired and the flare I had then really went for my chest and it has not really improved. I have an inhaler and they say it is asthma. I am currently doing a peak flow. I am not convinced as feel it’s more to do with throat but that’s a whole other story.

Jolevans
Jolevans in reply to Hamptons

Thank you for that!

It’s all very stressful As I was told it could be extremely serious for me.

My son had it and didn’t have a cough at all but felt feverish for 2 days and that was it. I sometimes get an annoying little cough with my asthma and everyone starts to panic.

Just for a change my GP was very helpful on the phone when I got pleurisy. I used to get this regularly before HCQ, so recognised it straight away & knew I needed steroids.

I... can't talk.... more than...a few....words at...a time.... when I have it. It wasn't until the end of the conversation GP checked there was no cough. Goodness I hadn't even thought of COVID - no cough, no temperature.

My understanding is that the cough, high temperature & possible loss of angel

Hi Sarah, your comments are really interesting for me. Before I was put on Hydroxychloroquine I had brittle asthma for many years. I was on three inhalers and salbutamol nebulisers. On average I had three admissions to hospital each year. For the eleven years I was on Hydroxychloroquine I had about three minor asthma attacks which I dealt with myself. My GP said I had grown out of the asthma. I had to come off Hydroxychloroquine last year because of eye issues, now my asthma is back with a vengeance. When I make the link between the Hydroxychloroquine and asthma they all look at me as if I am mad but I am convinced that is the cause. Thank you for commenting . I am relieved that I am not the only one to make the link xx

....(Sorry posted too early trying to remove the angel)

....loss of smell are indicative. Sneezes - no. I guess all you can do with asthma is point out no temperature or loss of smell to distinguish it.

Would be interested in experience of others with COVID & how they got on. I have Scleroderma overlap & medical consensus emerging here that patients are not as severely affected as they first feared.

Sarah x

Hi there I can empathise with your situation. Yesterday I had to call the on call GP and ended up with an ambulance on blue lights and a paramedic first responder all because my surgery will not provide me with a preventer. They keep giving me steroids which calms it but of course it flares again.The on call GP was saying I needed a Covid test but thankfully the ambulance crew and the paramedic disagreed. They spent over an hour stabilising me because I refused to go into hospital. The compromise was that I saw the on call GP at a local hospital. She was lovely but said in her opinion the virus I had, the repeated asthma attacks are in fact Covid and I must contact 119 today for a test. I feel frustrated because what I need is a management plan. I have a nebuliser at home and yet I took up four NHS professionals time because they will not give me salbutamol. Ridiculous. I hope that you can get the help you need. Asthma is scary at the best of times but in a pandemic it is frightening x

Yes I had it in March, although they were not testing so I was diagnosed without one because my symptoms were so classic. I was in hospital with pleurisy but thereafter managed to do most of my recovery at home with support and lots of additional steroids. It took 6 weeks in total but my immune system is highly suppressed due to immunosuppressant medication.

My symptoms were nothing like asthma to be honest, but obviously it you do have any of the three symptoms then you need to be tested as some people (even those with lupus) are getting very few or no symptoms. Plenty of people have had it with lupus, but every experience will be different as so many of us have comorbidities and are on different immunosuppressants. There's been a number of posts on here before if you wish to search.

It sounds like what you need is help with your asthma. Do you have a specialist you can contact for advice during this time?

He yes I have an asthma nurse who has helped me through.

Hello

Yes, I think I had it too back in December 2019 but then Covid hadn’t really come onto the scene.

At the time I was treated for a chest infection and had Numerous courses of antibiotics, none of which helped of course. I’ve had chest infections before but have never been as ill as I was last year.

The outcome of it was an X-ray, ct scan and lung function test which has identified lung scarring.

So, 11 months down the line, I have a face to face appointment next week with the respiratory consultant so hopefully will find out what, if anything, is going on.

I’ve applied to have an anti body test but the likelihood is it is too long since for there to be any.

Sue x

Chanpreet_Walia
Chanpreet_WaliaAdministrator

Hi Jolevans,

We shared a blog post from someone with lupus who had COVID-19. Read about her experience at lupusuk.org.uk/my-experienc...

Best wishes,

Chanpreet

Thank you for that. It was really reassuring.

Hi,

Thanks for posting but it is the blog of a 31 year old lupus sufferer who when she was eventually tested at the time of her hospital treatment was told that she will develop “immunity” to Covid-19. But that is the hope?

Some scientists and medics are saying that immunity is very short lived, hence prevention and constant shielding for lupus sufferers are ALL important.

“...They have said that they are unsure if I will be completely immune due to the steroids that I am on, they aren’t sure if my antibodies will develop in the same way as a ‘normal’ person, but I am being careful, still isolating and have not been out to do anything...”

There is doubt whether vaccines currently being developed will work against this COVID-19 virus?!

Hopefully lupus sufferers will never get Covid-19: the treatment itself, the rehab and recovery afterwards (eg long covid) can be devastating particularly for us highly vulnerable lupus sufferers in the older age groups:

bbc.co.uk/news/health-54696873

bbc.co.uk/news/health-54696873

bbc.co.uk/news/health-54696873

I am personally not reassured by this blog when one reads about her suffering after her discharge from hospital.

Regards

I was put on inhalers in 1994 for asthma and in 2000 I became seriously ill after drugs and surgery. I was told that I had come to the end of the road where conventional medicine could help me and was written off as dying. However, I went the complementary route and found out I was allergic to dairy products. I was advised to cut out dairy and I would be much better due to it causing mucus in some people. I did so and I am still here and guess what - no asthma!

Jolevans
Jolevans in reply to Cann

Wow ! I may try and cut dairy out, I have had to cut it down as I know it an make me sleepy somehow.

Cann
Cann in reply to Jolevans

It is worth a try, hope it works for you!

If it is a cough that is not normal for 'u and ur'asthma that would be the time to get a covid test. I am an asthma nurse and I would not suggest that someone had covid straight away if they spoke to me at this same time every yr like they do with an exacerbation of their usual symptoms.

If their symptoms were different for them then yes, or their cough was different or suddenly started and was persistent for a length of time etc.

People who have had asthma for many yrs know the difference an u need to trust their judgement as a clinician too.

The flu vaccine, they may have had it but can still get the flu just a different strain soo it's not 100% effective

X

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