Positive LFT and scared: Hi everyone, I’ve been... - LUPUS UK

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Positive LFT and scared

Leenie0811 profile image
16 Replies

Hi everyone,

I’ve been super careful when travelling to my family back up north, I live on my own and I’ve used a mask everywhere I’ve gone but somehow today I’ve had a positive lateral flow. I did one on the 20th to drive my partner home which was negative, did one the 21st again negative and then I drove 3 and a half hours without stopping at a service station to ensure I didn’t come into contact with anything. I met my cousin who is a police officer and regularly tests she was fine but after seeing her I felt really tired, I put this down to driving for so long without a break.

Yesterday I slept most of the day and today I still feel very tired so my mum said take a test before we drive to the supermarket. It’s positive, did two they’re both positive. I’m on methotrexate and I’m frightened of what’s going to happen but I’ve had 3 vaccines (3rd end of November) and I’m waiting to hear from my PCR.

I don’t have any of the symptoms they say I just feel really fatigued and my ongoing issues with my joints but that’s been for weeks nothing new has started apart from sleeping a lot which isn’t abnormal for me. This has happened twice before and it was a lupus flare. Has anyone else had this? Has anyone had Covid on methotrexate? I’m scared and sitting on my own in my room is just making it a lot worse 😞

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Leenie0811
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16 Replies
Pumpkin2009 profile image
Pumpkin2009

I had Covid the beginning of last November before vaccines. I was told by my rheumatologist to stop the methotrexate for two weeks ( I had l already had Covid for over a week, but hadn't talked to him yet.) Call your rheumatologist. I still have some long Covid symptoms including lack of taste and smell. Since it has been over a year, not sure what to think. Also some other concerns, but they aren't as bad as before. Hopefully, you will not get some of the other symptoms, but it is concerning you are dealing with this. I personally think it attacks weak areas just like lupus so it becomes very difficult to separate what is what. At this point for me, it no longer matters. My rheumatologist's advice is to take whatever over the counter for what is going on to cope so that is what I have been doing. Take good care of yourself.

Christmas and healing hugs.

Leenie0811 profile image
Leenie0811 in reply toPumpkin2009

Thank you, I will call my rheumatology nurse tomorrow when their phone line opens to ask for advice. I usually inject on a Wednesday but I didn’t because I was feeling so tired. Learnt the hard way back in September when I did and ended up on steroids and antibiotics when a viral infection turned really nasty and infected my respiratory system. I don’t have any of the symptoms on the NHS website I feel like my normal illness is playing up which is worrying me more. Only thing that’s more noticeable is my bowel and bladder issues with the tiredness I had yesterday. Thank you again and hope you have a nice Christmas x

Quiettwerp profile image
Quiettwerp

Did you catch it from someone obviously positive whilst unmasked in a confined space?🧐

Police officer cousin/friend 👮🏻‍♀️? The last person you saw?

But how often does she/he test?

Omicron variant gets round very easily.

Sorry to hear but in the U.K. it’s everywhere now.

Leenie0811 profile image
Leenie0811 in reply toQuiettwerp

I’m in the U.K. too and she has to test for her job, she did it yesterday for seeing her grandma at the care home and it was negative. I’m always wearing a mask and carry hand sanitiser everywhere too, the only place I’ve been outside was when I met her before that I was indoors for well over a week. I’m just worried if it is confirmed by PCR that it’s Covid the tiredness I have now will just be the start of it and I have asthma as well as lupus, endometriosis and Raynaud’s I’ve been so careful 😞

baba profile image
baba

Speak to your rheumatologist/doctor. You may need to stop your methotrexate temporarily but get MEDICAL ADVICE. Best wishes and Happy Christmas.

Leenie0811 profile image
Leenie0811 in reply tobaba

Thank you, I usually inject on a Wednesday but didn’t yesterday because I felt so tired I was going to today but I’m holding off until the PCR result comes back. I’ll call my nurse tomorrow and double check what they advise. Hope you have a lovely Christmas x

bathouse profile image
bathouse

HelloPlease try not to worry, easier said than done. Sometimes Ignorance is bliss.

Have a look at the ‘Panoramic Study’, more information on Lupus UK site.

Rest if you can, kind regards x

Leenie0811 profile image
Leenie0811 in reply tobathouse

Thank you very much, I’ve got some books here to pass the time until the PCR result comes but I’ll check out The panoramic study for sure!

Tbrz profile image
Tbrz

Hiya, if you had a positive lateral flow it probably means you have it, so get a pcr immediately, because you can get the anti viral meds - call your GP about them. It is not unusual to get Covid even with the vaccines, especially for people with weakened immune systems. Take care 😊

Leenie0811 profile image
Leenie0811 in reply toTbrz

Thank you for the advice I’m waiting for the result to come back and I filled in the form for the study on another comment. Once I have my PCR result I’m going to call my rheumatology nurse and ask there for advice and if they can get me the medication. I’ve had a telephone appointment with the doctor today about a referral and he was very rude (on call doctor not my usual one) so reluctant to call again because it’ll be him who deals with it

Krazykat26 profile image
Krazykat26

Hi Leenie 🤗 Sorry to hear you've tested positive 😔I had a letter this week to say about treatments for Covid and it says if the PCR test is positive I will be contacted by a health professional within 24hrs. I've tried photographing the relevant bit in the letter but it's not good quality..I'm bit shaky today..I hope you can read it.

When I posted about this letter during the week a lady replied who had had treatment n it was very effective. 🌈😽😽Xx

Photo of letter
Roarah profile image
Roarah

There are many early treatments available call your doctor today they will best advice the best way to proceed. Hope you feel better soon.

CecilyParsley profile image
CecilyParsley

Oh bless you. I cannot give any advice but just wanted to send you a big Cwtch. Please contact your Rheumy to get advice. Xxx

Take care you will get through this . Try to focus on something else. Make sure you contact a relative or friend if you need to. I'm sure we are all thinking of you on here.

Melba1 profile image
Melba1

Hello, try not to worry as if you don’t feel rubbish already it may well be a mild version. Methotrexate needs to be stopped until better but methotrexate hasn’t been found in studies to make the chance of severe covid greater so fingers crossed.

I had covid at the start and was on cyclophosphamide, rituximab and high dose steroids all of which have been identified as making it worse for us but I just had a week of feeling flu-like and a bit of breathlessness for a few weeks but obviously all different and some seems to be just luck and different bodies reactions so do seek medical advice (hard over Christmas!)

I’ve just tested positive again today and feel really unwell 🙄 so trying to get hold of the anti virals but the letter we received does not seem to have been received by my duty GP!

Hopefully your rheumy nurse was helpful and you don’t get too poorly but most people are doing ok so just resting, stopping methotrexate and seeking medical advice should hopefully keep you as well as possible xx

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