Tested positive to covid and have lupus - LUPUS UK


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Tested positive to covid and have lupus

Sallmell profile image
17 Replies

I have tested positive to covid and have SLE lupus. Had anyone else been in same position as the pain is horrendous and I am really struggling 😪

Its only day 1 and have had both covid jabs. Hope it doesn't get any worse!

17 Replies
Jmiller623 profile image

I’m so sorry sallmell. No advice but sending many well wishes and an expedient recovery. I don’t know if steroids would help at all but maybe ring your physician and ask if there is anything they can give to help with your discomfort. Sending hugs. ❤️xx

Insomniacette profile image

Oh Sallmell I'm so sorry to read this - sending you lots of support and well wishes!!! xxxx

Ingrid1234 profile image


So sorry to hear this 😢.

If you’ve been double jabbed with the covid vac shouldn’t you be protected from covid?

Are you reacting badly to the jab itself or is it actually an infection!

Just don’t get it🤔

If you say you’ve been tested positive for COVID-19 could it not be false positive? Some tests are wrong but…!

Get well soon.

Sassysall74 profile image
Sassysall74 in reply to Ingrid1234

I believe that the jab doesn't give full protection. Much like how the flu jab works. It lessens the severity. Had a terrible night with unbelievable pain but seems to have eased to a manageable point. Xx

happytulip profile image
happytulip in reply to Ingrid1234

You can still get covid despite vaccination. It just reduces the requirement for hospitalisation.

Djlr profile image
Djlr in reply to Ingrid1234

It depends on the COVID19 VACCINE- but between a total of “6 to 8 weeks” after the VACCINES - people are “supposed” to be protected.

Yet, a different STRAIN could infect a vaccinated person, but THEY are ASSUMING the effects of the DIFFERENT STRAIN will be milder than without the VACCINES.

Of course, some past vaccines were NOT totally effective-

ie: CHICKEN POX. (My daughter had full blown case and my son “a few spots” - both vaccinated)

These COVID19 vaccines are still for EMERGENCY USE - not long term tests on effectiveness yet.

But, some have already proved to be more effective than others.


suzannah16 profile image

❤️ I hope it passes quickly

Treetop33 profile image

I believe I caught Covid in March 2020 but couldn't be tested as they weren't doing it then and I wasn't sure because they weren't releasing the full symptoms. I have SLE (although stable). I'm sorry to hear that you have it but it is survivable for lupies. Get advice from your rheumy on how to manage it (there are a lot more treatments these days and the vaccines offer some protection from severe illness). Take care and don't hesitate to seek medical advice xx

Maddymay65 profile image

So sorry to hear that. Please ring your Rheumy or Connective Tissue Nurse for advice , they are good port of Call. Otherwise try go for out of hours number from Gp for someone as a stronger painkiller may help . Rest up, drink plenty of fluids and regular painkillers for now ,hope you feel better soon, so sorry M x

Loopyru profile image

So sorry to hear this. My consultant at Addenbrookes told me that because I have Lupus I won’t have made a good immune response to the vaccines.. . You take care and do hope feeling a bit better soon.

Pumpkin2009 profile image

I am so sorry to hear you have Covid. I got it in November and am now a long hauler. Ater 8 months, I still have gastric issues, can't taste or smell, had heart arrythmia that had been stable and has come back in spite or med increases, lupus symptoms worse, etc. Do reach out to your rheumatologist. I was taken off of methotrexate and leftoumide for a couple of weeks and was advised to take Tylenol 24/7 which I do anyways and to take over the counter meds to help with the nausea, diarrhea and constant sinus problems. The nausea and sinus problems are a little better. I can't truly separate what is lupus and some of my other medical issues from Covid nor can my doctors. My doctors are not pushing me to get the vaccine as they don't know what to tell me. Because of the heart arrythmia coming back and still having symptoms, I am not doing anything at the moment. There is a good chance I still have antibodies. Above all rest and try not to stress. There isn't enough know about this so listen to your body and anything that is even slightly worrisome, call your doctor.Many healing hugs.

Djlr profile image

Definitely contact your RHEUMATOLOGIST & stay on Hydroxychloroquine

You might also treat the symptoms with the same natural VITAMINS that were helpful in mild cases of COVID19.

ZINC - 50 mg

VITAMIN C - 1000 mg

VITAMIN D - 5000 mg

MAGNESIUM - 400 mg

Also: Probiotics



nanleighh profile image


Sallmell profile image

Thanks all for your kind messages. I am day 3 and have to tell you its been awful! If no better tomorrow I will call my rheumatologist nurse for support. I hadn't had full protection from 2nd vaccine as was just under 2 weeks from 2nd jab and contracting covid. I stupidly went back to the office under duress. Office being a University... chances are I picked it up from their as not been anywhere else. It frustrates me so much as the risk to those with underlying health conditions is greater but same old thing, I look well so what is the problem.

Anyway, thanks all as your messages have helped me xx

Pumpkin2009 profile image

Sallmell, You have done nothing wrong. Please call tomorrow so you can get some support.

Healing hugs.

sasa profile image

Try Ivermectin as well as hydroxychloriqine

Before I knew I had auto-immune condition, I caught covid March 2020 walking past a very ill runner. At the time we were just being told to wash our hands, there was nothing about social distancing or mask wearing for non front line folk. I was stuck on the pavement on a busy road, so could not move away.

Had first jab (AZ) end of March 2021 and had terrible reaction - day 9 to 16 frightening and only just starting to get rid on ongoing headache, GP now waiting for advice from rheumy on whether to offer second jab, and if so which to give.

As I'm certain had the virus, and because of bad reaction to first jab - personally I'm not interested in current shots now, only very very possibly the updates for the new stains..

Since my experience, of catching the virus from a runner, I'm staying my distance from everyone, always wearing a mask near others, even outside. Believe virus is so light it can stay in the air about a minute - I walked straight into a stream of virus laden air. In Australia I believe people have to stay 'two dead men apart' - twice the distance we do here.

Also cyclists, people shouting, talking loudly or singing and air conditioning throwing virus laden air off the floor and around rooms.

Take care, and takes things easy if you have covid

Even when you think it has gone, I think the spike protein lingers everywhere....

....attached to Angiotensin-converting enzyme 2 (ACE2) receptors in so many tissues in the body

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