Share your experiences of the COVID-19 pandemic f... - LUPUS UK

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Share your experiences of the COVID-19 pandemic for online UK-based research study

Chanpreet_Walia profile image
Chanpreet_WaliaAdministrator

Researchers conducting a COVID-19 UK-based online research survey are looking for people with rheumatological diseases to report their experiences with COVID-19 by completing the Covid-Rheumatology (CORE) report. The survey collects anonymous data and takes about 5 to 10 minutes to complete.

The information provided will help clinicians determine the risk the infection poses to patients with rheumatological conditions. Also, it will assist in determining whether medications used to treat these conditions influence COVID-19 infection outcomes, and the influence of the infection on the rheumatological diseases themselves.

Learn more and take part at lupusuk.org.uk/covid19-study/

Thank you.

12 Replies

Hello Chanpreet

I have shared with my group and completed.

Always happy to take part in these surveys.

Best wishes

Wendy

Chanpreet_Walia profile image
Chanpreet_WaliaAdministrator in reply to Wendy39

Thank you for sharing and taking part Wendy 😊

Ditto that Wendy, I’ve completed it too.

Wendy39 profile image
Wendy39 in reply to Horsewhisper

HelloHow are you?

Wendy

Horsewhisper profile image
Horsewhisper in reply to Wendy39

Ok at the moment Wendy, thanks for asking. I started Tocilizumab 3 weeks ago to dampen down the GCA activity and it seems to have started working - and having small benefits on overall AI symptoms - headache subsiding, fatigue abating and a slight increase in feeling a bit “better”. Or is it because I’ve just managed to stop completely over Christmas?! I dunno! Anyway, hope you are ok and the kids alright back at home schooling? How’s your lovely doggie? 🐶🐾xx

Wendy39 profile image
Wendy39 in reply to Horsewhisper

I'm so pleased to hear that. Let's hope the slightly better feeling continues. I am always fascinated by the fact that other AI and Rheumatological illness have all these biologics on offer, that I've for the best part, never heard of before. It's amazing. I only know one lady who's had rituximab for her lupus but I know many lupus patients who would hit the criteria and benefit from them, but they are seriously restricted here, (not sure if money or just lack of understanding of lupus). They are used here for psoriatic arthritis, rheumatoid arthritis, etc etc. Just not lupus. I guess they are bound to help any AI cross over, which everyone seems to have. Will you continue to feel an improvement? How often are they done?

Christmas was certainly a lot less hectic this year for us and felt relaxed. So although missing some people and family traditions, we all took things easier, which was definitely a plus.

Coco is growing fast. She is adorable. We've just rescued her from the field next door and had to bath her. Only her 2nd ever bath and they aren't growing on her! She generally very well behaved. We don't have any regrets. She is the best thing we did in 2020 for sure. The children all love her to bits. She has company 24/7 at the moment and I am worried how she'll cope when they go back to school eventually.

Home schooling is a very sore subject in our house. 10 months of disrupted education and they all hate it. They aren't getting live lessons. It's watch this video, of someone other than their teacher, and complete this work sheet. Very often with no reply from a query during the lesson time. They were Year 11 last year and year 10 - the two eldest that is and so went through GCSE stuff last August with eldest, but at least he had been taught the majority of the curriculum by the time schools shut in March. He got good grades in the end and was allowed onto the A level courses he chose. Computer Science. Maths. Physics. It goes without saying that I am no use to him with his studies at all. So now he's supposed to sit AS levels here - in Wales they must pass their AS levels, half way through the A levels course, or they aren't allowed to continue to 2nd year of the A levels course - and the middle one is Year 11, so now GCSE year. I think the middle one has it the toughest. It really could not have come at a worse time for their education. Both boys want to go to university, one computer science and one engineering of some description, so a lot riding on it all. Our youngest, daughter, is Year 8 and so it's a lot less worrying for her. She has time to catch up before GCSEs and A levels.

Everyone and every family is struggling with this for different reasons, aren't they. We are lucky that we are all here and they are healthy and we've not lost anyone.

My best wishes for your feeling better to continue.

Wendy x

KayHimm profile image
KayHimm in reply to Wendy39

More bad news: June 26, 2020 Janssen discontinued their phase 3 study of Stelara, a biologic used in RA, due to lack of efficacy.

To your point, the article states « lupus patients are waiting for better treatments, which makes this outcome disappointing. »

Horsewhisper profile image
Horsewhisper in reply to Wendy39

Hi Wendy, yes it’s very interesting that the biologics are used as standard for a range of AI diseases but not really that much for Lupus? Maybe Lupus symptoms are too varied within the disease to treat and perhaps cost is a big factor. Have you mentioned the use of biologics in the treatment of Lupus to Dr K at all? I’ve just seen Kay’s reply regarding Ian Bruce and his research - that will definitely be worth looking out for. And perhaps with the use of Tocilizumab and Sarilumab in the treatment if Covid 19 will heighten the benefit of these biologics in reducing inflammation and dampening down a hyperactive immune system, which we AI’ers are all too familiar with! Anyway, lots to think about and to keep track of in the news at the moment.

I have weekly, self-administered injections and the plan is to start a quicker taper from the Pred dosage (currently on at 22.5 mg). I do hope the slight improvements continue, it is early days and I’m being realistic as TCZ doesn’t seem to work for everyone.

Great to hear that Coco is being fab - they are such a big part of the family and a great distraction. for the kids, particularly at the moment. It is really tough on the youngsters - my daughter spent much of the Christmas holidays revising for her A level mocks only to be told the day before she went back that they were to be cancelled. She was really annoyed as she wanted to do well and now she feels really deflated. It’s keeping them motivated - along with being connected to their friends and just trying to keep life as “normal” as possible, very hard indeed. Good to hear that your boys know what they would like to study at Uni - at least they have something definite to aim for and as you say, your daughter has plenty of time to catch up.

Indeed we are lucky that we have not lost anyone and our kids are safe and well - a lot to be thankful for, most definitely. I treasure every minute I have with them.

Anyway, thank you so much Wendy for your kind wishes, I’ll keep you posted as to the treatment developments. Take care and keep well🤗😘🤗

It is interesting, though probably not surprising, that lupus has fewer approved medications. The US is responsible for 75 percent of the world’s medical research and devotes a significant amount to lupus research and education. New NIH research for 2021 is $19 million. Department of Defense’s research received $10 million, double from last year, for its Lupus Research Program.

Although there is major research activity with regard to lupus in the US, there has not been a successful new medication until Benlysta since prednisone and Plaquenil. One theory is the complexity of the disease. There are a variety of mechanisms that go awry in lupus.

A UK rheumatologist, Ian Bruce, has done one of the important studies on Rituximab in refractory lupus. The patients he studies had active lupus that had not responded to two conventional immunosuppressive therapies. It could be that the UK has guidelines that reflect this study.

I would be surprised if any monoclonal antibody that had the potential to help lupus patients has not been studied or is being studied.

There are many more drugs for patients with rheumatoid arthritis. Lupus, Sjogren’s, and scleroderma are not as successfully treated, for sure. But it is not for lack of trying.

Good news: Keep your eye out for research Ian Bruce is doing with a monoclonal antibody from AstraZeneca. He calls this drug « a real breakthrough for people with lupus. » Results were published in The Lancet. Sounds big.

Paul_Howard profile image
Paul_HowardAdministrator in reply to KayHimm

Hi KayHimm. This is about Anifrolumab. We've been involved in a preliminary scoping exercise with NICE and expect an appraisal of this new medication to take place later in 2021 hopefully.

KayHimm profile image
KayHimm in reply to Paul_Howard

All sounds promising. Interesting that one of the arms of that study is taking place in my neighborhood. I just read very encouraging remarks from the American college of Professor Ian Bruce. 🎈

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