Lupus + covid positive: Hi all. I have Lupus, I'm... - LUPUS UK

LUPUS UK

28,898 members25,316 posts

Lupus + covid positive

Apricot100 profile image

Hi all. I have Lupus, I'm double jabbed and was diagnosed with covid on Tuesday. I feel awful.

Have left messages for my rheumy but not heard back yet.

Just wondered if anyone else here has been in similar position and can offer advice as to what to keep an eye on. I'm currently feeling like someone has a sledge hammer to my head, cold and flu symptoms, itchy skin and burning eyes, feeling hot and general malise. It's grim.

Thank you xx

56 Replies

Sorry no advice but best wishes and hoping you feel better soon 🤗x

Apricot100 profile image
Apricot100 in reply to stiff19

Thanks Stiff. Hope you're OK xx

stiff19 profile image
stiff19 in reply to Apricot100

🤗ok Thankyou 🤷‍♀️🤣🙏xx

hope it passes quickly with no lingering effects xx

Thanks Suzannah x

Gentle cyber 🤗🤗🤗ApricotSorry I've no experience but I really hope you recover soon 🌈😽😽xx

Thanks KK. It's pretty grim x

Just wanted to send to good wishes and I really hope you get better soon. Don't hesitate to pick up the phone for medical advice if you feel you need it x

Thanks HT. Called rheumy yesterday morning... still nothing x

Hope you feel better soon x

Apricot100 profile image
Apricot100 in reply to Ruby3333

Thanks Ruby, hope you're well x

Hi Apricot100, I hope you are on the mend. I also have lupus and had covid 2 weeks ago. My symptoms were coughing, with phlegm and wheezing. I managed to get through to my Rhem team and the GP. I was advised to take additional vitamins, Vit D, Vit C with zinc and Vit E. I was also put on emergency 30mg Prednisone for the inflammation for a week and strong antibiotics for a week to tackle the phlegm. I dropped mycophenolate whilst I was on these emergency drugs. I got myself an oximeter and was advised should my stats come down to 92% and feel poorly, I should go A&E.I used inhalers to treat the wheeze. In addition, I drank a lot of honey, ginger lemon tea, ate spoonfuls of Manuka honey from Holland and Barrett’s, I ate as much veg and fruit as I could. There are no medications to treat Covid, only your immune system can fight it. I was told the worse days are days 3-10 of when symptoms first appear. Once you pass the 10th day, you should start to feel better. Rest up and try to eat healthy. I forced myself to eat even when I didn’t have an appetite as I needed the strength to recover. Wishing you all the best.

Apricot100 profile image
Apricot100 in reply to FLY76

Thank you so much Fly76 for your detailed reply. My throat us like sandpaper and I have no appetite- I've had a bowl of Weetabix and some toast in the last 2 days. I'm living off cocodamol and herbal tea. So far no phlegm but I suspect uf the cough continues it might come. Thank you again . I hope you are feeling better now x

Sleep on your belly so you get more oxygen and to prevent the virus going into the lungs. Also constantly drink a little bit of any liquid ( tea or water) so you wash away the virus from the throat. again it helps with preventing the virus going into the lungs. Hope you get better as soon as possible? Im hoping your regular doctor prescribed proper meds. Usually it is a combination of azithromycin, a probiotic and some other stuff...

Apricot100 profile image
Apricot100 in reply to Tanitani

Hi Tanitani. I've not had any contact from any doctor or rgeumy - no one's returning my calls. I'm trying with liquids but it's incredibly painful.

I'll keep trying with rheumy and GP. Thank you x

Tanitani profile image
Tanitani in reply to Apricot100

That's a shame. Is there some specific covid clinic to give you meds? Thats crazy that you have covid and clinics are not responding. It is crucial to get meds as early as possible to avoid complications. Good you are vaccinated. That will help for sure.

Apricot100 profile image
Apricot100 in reply to Tanitani

I assumed that unless you had trouble breathing you just had to ride it out! X

Tanitani profile image
Tanitani in reply to Apricot100

Thats not correct. Everyone symptomatic should get meds to minimize getting to the point of no breathing. Actually I just looked up on the i ternet and looks like different countries have different protocols so maybe in UK you are left on your own

Maverick2 profile image
Maverick2 in reply to Tanitani

I understand several countries use different protocols, but the combination of antibiotics (azithromycin) and probiotics literally neutralize the effect. some countries used stomach acid suppressor omeprazole which favours the growth of gut bacteria and antibiotics. If you have come across any document related to scientific rationale, please add.

Hi I had Covid 4 weeks ago also double jabbed and have lupus. I was advised to stop taking my methotrexate and I just took lots of vitamins got a oximeter to check oxygen levels but I pulled out fine worst days were near the end day 8-10 hope you get better soon xxx

Thanks Sammy. Glad you recovered fine. I'm on hydroxy and etoximab and also have Rituximab infusions, last one a few months ago. Feeling a bit lost and alone with all this but less so thanks to you guys. My youngest daughter has also contracted covid so I sense rest won't be quite as easy to come by now!

If you can today find out if you can get an antibody test and get monoclonal antibodies if you didn’t have any this could reduce severity of the disease. I hope you feel better really soon xx

Apricot100 profile image
Apricot100 in reply to ShannonB

Thank you, I haven't heard if this. When I speak to someone I will ask x

Tanitani profile image
Tanitani in reply to Apricot100

For sure if yoj can get remdesevir that would be the beat BUT you need to get it within 3-5 days after the k set of symptoms otherwise it is not that effective

Also double jabbed caught it from my daughter in august. I was told if on any immune lowering meds (im on mycophenolate) to stop taking u til infection passes. Keep taking hydroxy and coleclalciferol. I got a throat infection so had to get antibiotics couldn’t swallow otherwise took paracetamol or Lemsip and steamed with olbas oil. Since having covid I have then had a UTI and chest infection another 2 lots of antibiotics one after the other. Still having problems getting out of breath and heavy breathing so being sent for ct scan as chest X-ray showing inflammation but they not sure if it’s the sle or long covid. Take care plenty of rest keep hydrated. On the plus side I think I would of been a lot worse had I not been double jabbed. Due my booster on Monday!

Apricot100 profile image
Apricot100 in reply to Kelbol1

Thank you. Yes I agree, worrying how bad I could be if not double jabbed. Counting my blessings! Hope your scan provides answers soon x

May all fellow Lupies with covid virus come through okay.Having all the replies to read is a practical help. . .ideas and sharing. It is also encouraging for someone like myself , very aware of the possibility that I will join you in this horrible experience. As if Lupus is not enough! But you have been giving some tools and information if and when "it" happens.

Thank you and prayerful best wishes. 🙏

So sorry I had covid beforeThe jabs I had took honey turmeric in hot water ! Had fresh soups carrots cabbage potatoes just pinch of salt and pepper and rest ! I know people r different so I wish u all the best 🙏🏼 And plenty of rest

So sorry to hear you are so unwell. Keep fighting and take care😘

i’m same boat as you but i’m not vaccinated.. just take pain killers and your meds your on … it will clear … x

Hi, i was in the same position as you, double jabbed, on mycophenolate for lupus, i caught Covid beginning of August, just like a heavy flu for 5 days, then chest pains, my Oxygen levels remained high, but ended up in hospital with Covid pneumonia for 6 days...if you haven’t got one, i advise to get an oxymeter to keep checking your oxygen levels, if any pains in your chest start call 111 or your GP For advice. I’m ok now but it took me about 4 weeks to get over it..i hope you recover quickly, best wishes x

Apricot100 profile image
Apricot100 in reply to myco1

Thank you. I've just had a phonecall with superstar GP. It seems my Rituximab is the problem as has made me severely immunosuppresed.

As you suggest, he's told me to get an oxygen monitor and has also prescribed antibiotics and steroids. He said i am at high risk and he'd be worried if I was his wife. I'm Sorting all today.

Thank you all.

😍

Hi, yes I have had Covid. Drink warm drinks rather than cold, take paracetamol for the head although it may not ease it much. Take antihistamine I would advise taking 3/4 to avoid reacting. If you get gunge in back of your throat take gaviscon or other antacids. Do nothing, just rest,

If you start to get breathless get an oxygen monitor to watch your levels but as you have had jabs hopefully it will not get like that. Try to lie upright.

Apricot100 profile image
Apricot100 in reply to Hamptons

Thank you, getting a monitor now and gp prescribed antibioticsxand steroids. Hope you get better soon x

Sending big hugs 🤗 and hope you will be better soon x

Apricot100 profile image
Apricot100 in reply to svfarmer

Thank you xxx

I hope you start to feel better soon. Xx 💐🌼🌸

Hug

Awww, thank you xx

Oh bless you Apricot. I am so sorry. I have no advice sorry but just wanted to say that I hope that you start to recover soon xx

Hey CP, thank you. Hope you're well. Xx

Getting over a nasty fall but nothing compared to you. Look after yourself xxx

Hello apricot 100, I sounds like you’ll feel like apricot 1000 very soon.I’m waiting to get tested tomorrow as I came

Into indirect contact with a COVID child.

I’m on day 6 and feel fine, just my voice got horsey yesterday. If my results I. 2 days are positive then I will take a lot of advice read here.

I take vid d, zinc, turmeric and glucosamine so I’m hope if I have it that those vitamins have made a difference.

Get well soon and thanks to all for the wonderful advice who h I’ll save in my folder of suggestions.

Happy Friday from California!

Apricot100 profile image
Apricot100 in reply to MorIlse

Such an amazing community isn't it. Thanks to the advice I wasn't quite as alarmed when my GP prescribed all he did and told me to get oxygen monitor. I'm a rare poster but always read. So glad I'm a member.

Give my love to California- was due to travel there Easter 2020, but you know what had other ideas!

Hope you're negative and take care xx

Blessings and prayers for you 💓🙏🙏

Boost your immune system and eat healthy get rest and feel better soon 🌸

Hi Apricot. I too have SLE and am double jabbed and tested positive for COVID on 12th. I was contacted by the NHS virtual COVID ward the next day who supplied me with a pulse oximetry device and rang me everyday to take readings and see how I was on two occasions my blood oxygen levels had fallen so they arranged for a GP to ring me. Initially, they doubled my steroid dose, and when last night this hadn’t worked, I was brought to hospital where I am safe, being well-monitored am on oxygen and a COVID effective steroid. My mycophenolate has been stopped for this period. And although still not well I no longer feel nausea all the time and have managed to eat half a ham sandwich and half a bowl of chicken soup today which is a vast improvement on a few teaspoons of custard for the five days prior to this. Keep hydrated, get a pulse oximeter and if your blood oxygen levels drop don’t worry about going to hospital - it is not like those awful scenes we were so scared of and shielding ourselves from for so long during the initial stages of this monstrosity.

Take care of yourself.

Sending love and hugs from my hospital bed. 🤗🤗😘😘

Apricot100 profile image
Apricot100 in reply to Bee_E

Oh Bee, so sorry to hear what you're going through. Glad you've been monitored well though. I've not heard of the NHS Virtual Covid Ward but it sounds like their doing a great job. One of my clients is my local hospital (indeed it's thanks to being NHS staff that my daughters, husband and I got a speedy PCR test) so although I have no fear going in, I don't want to be away from my daughters, especially my youngest who also has covid.

Glad you're eating more - lack of appetite is something I'm not used to. I managed a piece of toast today but couldn't face a cup full of chilli - one forkful and I realised it had no taste! Odd.

You've had it a while then - I assumed I'd be back on my feet in a week.

Hope that your new steroids kick that covid to the kerb for you. Rest and recover 🐝

😘

Sorry to hear that you got covid even after your double jab. It is now very clear that Only the immune system handles the infection. If you are in the early phase < 4 days of suspected exposure or <3 of symptoms try to avoid immunosuppressors like steroids. Take complete rest and food with high-fat content. Don't skip a meal as your food plays an essential role in the immune system. I will suggest you Take Vit C and D every one hour.

Apricot100 profile image
Apricot100 in reply to Maverick2

Thank you for your reply Mavericks. My GP has prescribed me Prednisolone which is a steroid, as well as antibiotics. I believe this is to beat any lung infection. I'm over day three of symptoms I reckon.

Although my appetite has been stripped by the covid I'm trying my best to eat but it's really hard as throat is raw . Maybe i'll try some avocado next as that's good fat isn't it. Cocodamol is my main intake at the moment - dispersed so I am getting fluids!

Hope you're staying well. X

When I'm poorly generally I tend to go for a simple veggie soup when my appetite is gone. We put loads of onions n garlic which are nature's antibiotics and thankfully I can tolerate them both...any veggies that you like..and I would include plenty of thyme coz that helps to clear the lungs n remove any phlegm. With this soup I find I can just tolerate enough of it to keep me going and I can just have a little bit at a time. Sometimes I'll even soak a bit of bread in there too.

I'm glad you've got some treatment now 🌈😽😽xx

PS..and as you're taking cocodamol my soup recipe will help keep you regular..so to speak!! 💩😉🌈😽😽Xx

Thank you KK. Unfortunately this morning I've just started throwing up. Less than an hour after taking the medication so not really sure what to do. Your soup does sound like an excellent suggestion xx

Oh no 😔 did u see any tablets in there? Or do u think you managed to keep the tablets? I've been on antibiotics before that made me sick but I never lost the actual tablet 🌈😽😽xx

Hi Apricot sorry to here you have covid I had covid last month andstill feel a bit weak and tired at times I was also double jabbed I was very chesty and if I got too flat t night I couldn't breath I had to have at least 3 pillows the phlegm comes up eventually and you can't stop coughing I had to have max strength lemsip to sooth my throat it helped before going to bed I was given antibiotics and told to take an extra 5mg of prednisolone each day until I started to feel better. Next week I am going into hospital to have my foot operated on my Dr is going to break my foot lift my toes up breakmy heel realign it with my ankle and then hope everything will be straight. I hope you start to feel better soon paracetamol to keep the fever down drinking plenty of fluids will help with your chest get plenty of sleep and allow your body to rest and recover that was all I wanted to do. take care & lol xx

Apricot100 profile image
Apricot100 in reply to daniel55

Oh my word you're going through a lot! I'm still coughing but it's changing to slightly phlegmy but I think it's OK. Dr prescribed steroids and antibiotics very early on so I'm hoping we've headed any infection off.

I'm hoping I've got through the worst as now on about day 5 and oxygen levels have never gone below 94.

I do hope your op goes OK and you manage to feel better soon

You may also like...