Covid 19 and lupus : I have lupus and connective... - LUPUS UK

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Covid 19 and lupus

Geeforce99 profile image
8 Replies

I have lupus and connective tissue disease , I had Covid last week and only tested negative this Wednesday then went back to work, now I have been signed off with extreme fatigue and pains in head eyes and both legs feet and hands, feels like I’m being pinned down If someone gets Covid 19 should they always call GP for antivirals if they have lupus or similar illness ?

I want to be prepared next time, GP is unhelpful and just signed me off and does not understand the illness and can’t give any advice.

thank you 🙏

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Geeforce99 profile image
Geeforce99
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8 Replies
Chris21 profile image
Chris21

Hi Geeforce99, you will only be offered antiviral treatment for covid if you are in the extremely vulnerable group. I’m not as I only take hydroxychloroquine.

Geeforce99 profile image
Geeforce99 in reply to Chris21

Hi Chris, Thank you for your reply, I am taking hydroxychloroquine and Prednisolone steroid yer that makes sense, Best Wishes Steve 😃

Looplylady profile image
Looplylady in reply to Geeforce99

I contacted my gp then hospital phoned the next day & had to go into a side room to have infusion of antivirals, I didn't really need by then as it was day 5. When I had my 4th covid jab it came back but as bad as before.....be warned.

Hope this helps

Geeforce99 profile image
Geeforce99 in reply to Looplylady

Thank you for your reply very good to know best wishes Steve 😃

MusicalFurbaby profile image
MusicalFurbaby

Hey Geeforce, I’m not sure as my experience will be helpful as I’m in Australia, and I understand the antiviral situation in the UK is more difficult…but I have lupus and I’m on hydroxy, and when I came down with covid about 3 weeks ago, they put me on antivirals straight away. My understanding is that people who are immunocompromised (which includes us with autoimmune disease) are eligible. But again, I don’t know if the UK has different eligibility criteria!

As for your GP, I’m sorry to hear they have been so unhelpful for you. Could it be time to hunt for a new one? Maybe get some word-of-mouth recommendations? You need a doctor who is interested in your care!

MrsMarigold profile image
MrsMarigold

Hi Geeforce. Today is my best day in 3 weeks. I had Covid and took antiviral but then after feeling great I got “ Covid rebound” and felt as you described. I’m not sure all the fatigue has lifted yet. I’m in the states and paxlovid is still only being prescribed for over 65yrs or high riskImmunocompromised. I agree with musical furbaby to perhaps seek another GP. In case you are wondering the antiviral truly did take away the worst of the symptoms.

With the rebound, as they call it, I experienced headache mild cold symptoms and pretty bad fatigue. I recommend the antiviral. Best, Titters

Geeforce99 profile image
Geeforce99

Hi Titters, thank you for your reply, sounds like the antiviral helped you. strange about the rebound, my fatigue seems to come in waves and I have to lay on the floor, yer problem is with GP large chain of three practices and when you ring it’s always a different GP, I went private to get diagnosed and may need to see private GP. Best wishes Steve

Maureenpearl profile image
Maureenpearl

Hi Geeforce99, I tested positive on the 8/7 after having symptoms for a few days. I sent my result back to Gov.NHS and they wanted a picture to prove I was really positive and to check if I was on the extremely Vulnerable register.

I was then sent a text to say someone from the NHS would get in touch with me regarding the antiviral drug. Someone did get in touch two days after and said I was entitled to have the infusion and I could have it up to seven days after first symptoms (this was now day 6).

Two nurses came to the house to give me the infusion which took 30 minutes to go through and then they waited another 30 minutes to make sure I did not have any adverse reactions.

I am classed as extremely Vulnerable because I have Prednisolone and Rituximab. A doctor did get in touch 24 hours after I received the text from the NHS and prescribed antibiotics and extra steroids. He also said I didn't need the antiviral because the antibiotics would help.

Hope this help.

Stay safe.

God bless

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