Hi I've received Positive covid results this morning. I've hd flu symptoms not much covid symptoms. Although taste has gone a bit funny today. Do I need to inform Rheumatology? Although my rheumy doesn't think I'm vulnerable. Feeling slightly breathless this evening. I have lupus and antiphospholipid syndrome. Any advice welcome.
Positive covid results: Hi I've received Positive... - LUPUS UK
Positive covid results
I think I'd tell them - I assume you have told the doctors your history and diagnoses? There is evidence that Covid causes clots - APS increases the risk so I have to say I'm a bit confused why your rheumy is so laid back about it! Maybe I'm wrong.
hss.edu/conditions_top-ten-...
Hope you stay safe and get well as soon as possible.
Morning hedal123Sorry to hear of your diagnosis, I send my love and hope you improve soon..jx
Hi Heda, I am so very sorry about your positive test. I really hope that your symptoms stay mild. I would definitely inform your Rheumatologist. Be kind to yourself xxx
Very sorry that you have Covid - I hope your symptoms are mild and that you recover very soon xx
best wishes for quick recovery 🙏
Thanks everyone for your lovely messages. I'm just taking it really easy. Just feel so weak. I'll be informing rheumy tomorrow.
Hi Heda123, I also have a positive result and gave Lupus. I phoned my rheumatology dept and they took me off methotrexate and upped my steroids. I was Ill with cough, no taste , no smell, fuzzy head, tired but now after a month feeling back to normal. Tell them as they may wish to change your medication about. Hope you feel better soon
Hi Teanau22, thanks for the reply! I'm glad to know you're feeling better. I'm only on hydroxy and aspirin. But I'll definitely call them tomorrow. My cough seems to be getting a bit worse and slightly wheezy.
Hi Heda,
I think you should call your rhematologist. I posted under Have Covid 19 with Lupus and Antiphospholipid Antibodies recently. I have been sick for 6 wks with Covid 19. I did not call my rheumatologist right away and was glad I did. He told me to stop leflunomide and methothrexate and increased my prednisone and stay on plaquenil. He also advised me on taking over the counter meds for the diarrhea, nausea, etc. and to take Tylenol every 6 hrs. 24/7. I wish I had called him sooner. I did not know that methothrexate and leflunomide could make the virus worse.
Take care and do not overdo as it can make the virus worse quickly.
Healing hugs.
Yes, I think you definitely should let your rheumatologist know. There is new medication that is being trialed in the U.K. It was approved for emergency use in the US for high risk patients. It is a monoclonal antibody by Regeneron. Has to be taken in the first days of illness. You might want to ask your rheumatologist about it.
Are you on an immuno-suppressant?
Take care. Stay in touch.
Xk
So this is the response I've got. Dear Ms Mulla
Please see Dr Reynolds response below:
Dear Ms Mulla,
Thank you for contacting us about this.
There is certainly no doubt that coronavirus infection does significantly increase a person's risk of blood clots and probably the more severly a person has COVID the higher the risk.
As I am sure you are you will realise there has not been enough time for the medical world to study in detail the specific risk for lupus patients with antiphospholipid antibodies and the lupus anticoagulant like yourself but there is certainly a theoretical risk of a further increase in blood clots.
My advice is to be particularly vigilant for signs of blood clots which may manifest as pain and swelling in your lower leg or, if it occurs in the lung (a pulmonary embolism) to get a very sudden onset of shortness of breath perhaps with associated dizziness and later on to develop pain when breathing. If you were to get any of the symptoms I would advise you to attend the local emergency department straightaway.
Regarding active things you should be doing- I would advise keeping well-hydrated, to avoid being immobile and if someone could purchase calf compression stockings for you to use while you are unwell, that would be very helpful.
Best Wishes
Piero Reynolds
Very thorough response. As I expected, your doctor is concerned about you and has given you clear instructions.
Don’t hesitate to be in touch with your doctor if anything changes. And come here for support. Many of us have had Covid and will be able to relate.
Take care.
Xk
Thanks Kay Himm. I have had sever leg pain but it feels like sciatica more than anything as the whole of my left leg had been hurting and driving me mad. Just did cold and hot compress and took some pain killers. I'll have to get some energy so I can do some stretches.
Unless you are familiar with sciatica you need to be careful with that leg pain. Maybe someone who has more experience with APS will advise you.
A lot to think about, I know.
Have you been on hydroxychloroquine for a while? Do you know how you were exposed to Covid?
Hi AuntTea,Yes I've been hydroxychloroquine for approx 10 years or so. My mum became ill first but only mild flu symptoms and we didn't think much of it until she lost her sense of smell. So I probably got it from her but not sure where she got it from. She's been shopping, and she's a childminder. So who knows? But this new variant is easier to catch apparently.
Hope you are feeling better.
I'm getting there slowly. Still feeling quite weak. Doctor came to check up on me and the rheumy nurse called me too. I've been put on antibiotics too.
Have been thinking about you and was concerned as your doctor clearly is. Hope you get some rest and can manage to at least have tea, soup, and light things.
Xk
Aww thanks KayHimm. I am eating small portions of food. I just want my energy back!