Since a number of members in this forum are using hydroxychloroquine, including myself, I was wondering if anyone has surveyed our population to see if we have been exposed to COVID 19 and if we have been tested positive or negative. I am curious that if we already have a blood level of the drug, if we are a good group for research on COVID 19
Effects of Hydroxychloroquine on COVID 19 - LUPUS UK
I’d been wondering the same thing. I stopped hydroxychloroquine last November after only 6 weeks, but have been curious over the same question. Thanks for asking it.
Krock1 Very good post! I too have been wondering about this but it seems like we’re a group that have been under-looked; especially in light of the conditions classed as vulnerable or high risk unfortunately for some that their condition does in fact include involve organ involvement with their disease. It would be an extremely useful survey to under take during the current circumstances. Paul_Howard What would think regarding this?
Sort of makes me wonder whether our issues are linked with a virus in some manner.
It's sometimes weird the way my mind works.
especially since the symptoms are very similar to my lupus daily symptoms, fatigue, loss of taste/smell, fever etc
Well I don’t blame you! Most of the individuals that have recovered from Covid-19 say they all experienced similar symptoms but at different stages of being infected. Most Rheumatologists think Lupus/MCTD have been within the system but triggered by environment, pregnancy or once the baby had been delivered, if glandular fever had occurred... I’ve just watched the news in London and they have now spoken about the trials using Hydroxychloriquine with regard to Covid-19.
I had a really bad case of glandular fever when I was younger. Totally flattened. Spleen really inflamed.
I remember I used to get black outs when I was younger and very bad Urticaria after I had a bad infection and extremely unwell that was Primary school age! I don’t know what infection I had? My symptoms of Urticaria where on/off right up into my teens then I had remission. All started again when I was at Uni and I had periods when I felt malaise and badly fatigued. It wasn’t until the end of my pregnancy that I started feeling unwell but put that down to pregnancy. Once I had my son who is now 11yrs I rapidly got increased symptoms with new symptoms of unbearable pain and once a sun lover developed severe photosensitivity with nasty symptoms.
I do hope you stay safe.
Not weird at all. Connecting the dots.
Just been on bbc news that they’re starting trials of hydroxychloroquine as a treatment for Covid19
Yes watched it too on BBC News24 A doctor in France had already started these trials on individuals that tested positive for Covid-19 10 individuals from each various age ranges e.g 8-14yrs, 17-25yrs, 35-50yrs & 60+ yrs. I read an online Medicine Journal, Institute of Medicine France.
I sent my thoughts on this to U of Minnesota where they are doing a study. It seems like it would be a quick way to get a study completed without having to monitor for side effects in new research patients. Possibly, a survey could be conducted of rheumatologists in hot spots to see if any of their patients tested positive or negative to COVID and if they were on hydroxychloroquine.
I have also been wondring this. If hydroxychloroquine is being seen as effective in the treatment for COVID-19, does this mean thos that are taking it and have been for many, many moths or years, are they automatically resistant or immune to it? Is it possible for someone who has been on hydroxychloroquine years to contract COVID-19? If so, how? considering this is being seen as good treatment for it.
I know there are unfortunately a number of SLE sufferers who have had it, have it or recovering from it - a few have mentioned on North West Lupus Group FB page and unfortunately, there are members here that have.
As I seem intolerant to hydroxychloroquine (no rheumatologist, so cannot discuss this), what does this mean for me? If I get it, it's tough?
What gets me is going as far back as September I was feeling worse than ever with all the symptoms of this corona virus did not get to see rhumi several Dr appointments told its virus so no antibiotics refered to nurse for breathing problems. In the meantime I had started upping the hydroxichloroqine myself back to two a day since the rhumi on my last appointment six months previous had said everyone was being told to reduce to one every other day. The thing is everyone especially before Xmas was complaining of health problems flu symptoms pains breathing the lot and most of all could not get rid of it and kept getting it back again. I do believe by upping my dose I managed to eventually get through the worst but saying that I'm still trying cope with the usual stuff waiting for rhumi nurse to return my call. Just to add when I say everyone that is people who are usually well not with any health issues.
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