need some advice from you lovely lot.

[BonnyB]

I tested positive for covid NYE. I've had the usual symptoms which haven't been pleasant but I've coped. I'm still positive on LF today.

I think it sent me into a flare as my eyes are dry, rash on my face, swollen fingers, extreme tiredness etc but of course some of the covid symptoms overlap with uctd symptoms. It's so confusing.

My chest feels tight with mucus and I'm drained.

I'm taking 400 hydroxychloquine. Kept off the ibuprofen as I found it made me wheezy. So just having paracetamol.

My question is do you think steroids would help in my situation? I've managed to avoid themselves far ( a huge flare , waiting weeks for the hydroxychloquine to kick in) but feel this is different.

I'm double vaccinated and booster.

Thank you x

[Treetop33]

I'm afraid none of us are equipped to answer that question. Can you get in contact with your rheumatologist? Tall order I know, but they'd be the best people to advise. Or speak to your GP if they are any good. Were you offered antivirals when you test positive? Take care xx

[BonnyB in reply to Treetop33]

Thank you, I will contact them this week if I don't improve. No I wasn't offered anti vials x

[Hamptons]

Steroids may reduce the inflammation. Covid symptoms in my experience just have to be worked through, unless you could get some anti viral medication. Speak to a rheumatologist

[BonnyB in reply to Hamptons]

Thank you x

[Da_vinci]

Hello Bonny, The steroids need to be prescribed by your head dr, a rheumatologist or so. I am on steroids since 2017, the side effects aren’t nice at long therm, if you have been having high doses for a long period of time, I have started with 50 mg of Prednisone a day due a kidneys inflammation but then with the time it was reduce to 5 mg per day, again the thing is how your body react to the medication and therefore adjust the mg according to your health and tolerance. I can say that they actually help to reduce the symptoms, pain and also to reduce inflammation. I think you should ask your GPs to try it, it will help you to feel better in a reasonable time. There’s another one which is Azathioprine, but like I mentioned above, it is your dr who will decide which is the best for you. I hope you get better soon.

[BonnyB in reply to Da_vinci]

Thanks for the information. Just over a year ago when I had a huge flare they considered giving me steroids to help until the hydroxychloquine kicked in. But after long chats with the nurse who said if you can get by do because of covid.I decided not to . Xx

[KnitSewPurl]

did they check your antibodies when they did your PCR?

[BonnyB in reply to KnitSewPurl]

No , my husband arranged my pcr as I felt so ill and he thinks he skipped the part where you can have them checked x

[Maddymay65]

I am not sure where you are but i thought people in high risk group in uk were being offered anti virals. I have been sent a pcr test and if i , (fingers crosssed i dont )test positive i have to ring a number and then be redirected to anti virals. But i agree gp first port of call then rheumy, I am so sorry you are having a rough time of it and hope you get some help and relief soon, the only other advice i can offer is fro dry eyes using good eye drops day and night , certainly helps me , I use Systane hydration recommeded by my opthamologist , what a game changer , and obviously as much rest as possible Sending hugs M x

[BonnyB in reply to Maddymay65]

Hi, I'm in England. I'm not classed as high risk group . Hydroxychloquine isn't included. I managed to avoid steroids so I wouldn't be in the high risk group. I'm not eligible for the 4th vaccine or had to shield. I've worked throughout. My thoughts were more if I have had steroids now I'm at no more risk as I've just had covid.

Notl sure if I'm thinking straight with that though.

I will try the eyedropper. I use hyco and they are usually great but my eyes are so dry.

Thank you x

[PositiveT]

Hi. I am so sorry you have covid. Sending you positive thoughts to improve.I had a letter from the nhs and a pcr test sent in the post. The letter said if I get symptoms I should use the pcr post test and if positive a nurse will contact me to prescribe the special drug they are giving patients on immunosuppressent. Have you had the letter and test sent to you? If not it might be worth asking your consultant If you qualify so you can get the best treatment? With friendship and get well thoughts.🌻

[BonnyB in reply to PositiveT]

That's really great for you, pleased you are being looked after. No I'm not immunosuppressed on hydroxychloquine. As the drug just moderates the immune system. So anyone only on hydroxychloquine doesn't fit the criteria. I understand they have to draw a line somewhere but the vaccines , booster and flu jab all knocked me off my feet . Then I caught covid 3 weeks after the booster( was only just recovering. Its been 10 days now and I'm worried I'm flaring too.

Plus I have the guilt of working in a school and know they need me there.

Suppose I'm hoping steroids might aid a quicker recovery . Thank you x

[Maddymay65]

Sorry sounds like you have had a rough time . I understand why now that you didn’t get put in hi risk group. It’s so complicated isn’t it? I hope systane hydration work, they are not cheap but I find they help and I don’t get through as many cheaper bottles.If your flare continues I would have thought steroids might help , I normally give myself 4-6 weeks max depending how bad I feel , and the last thing you need is long covid

Sending hugs and hoping that time and rest will help. M x

[jopo280886]

Hi Bonny, hope this finds you even a little better 🥰 I was in hospital with Covid pneumonia in July, I was very congested as you can imagine and could not clear it at all, I explained to the docs that I had lupus and sjogrens which unfortunately makes everything dry n sticky, therefore really difficult to excrete 🙈 They prescribed me a decongestant called Carbocisteine, it really helped clearing the gunge from my lungs which helped me to breath! Relief to say the least! Very rarely do the medics have a holistic approach and look into your history, they only treat what you go to them with 😢 A very real problem with everyone that has a chronic illness like CTD Lupus etc…. You need to be an advocate for your own health Bonny! You take good care of yourself and keep at your GP 🥰♥️🥰♥️

[BonnyB]

Thank you so much for your reply.Have you fully recovered now? Hope so.

When u cough I feel like something is stuck in my throat. My throat feel closed up if that makes sense. I'm eating now but have to keep drinking to get it down. I feel like I'm congested in my head. There's no streaming. Everything feels very dry, nose, eyes, ears ,throat. Although being stick inside since NYE won't have helped with the dry heat indoors. Out of isolation today so I'm going to have a walk with my dog in the fresh air. X