Hi. I have just heard on the News that the trial of Hydroxychloriquine has been halted. The scientists had some hope that it could help in recovery or even prevent the virus. Now they think there are problems in that it could could worsen Covid and cause heart problems.
What about us ? (Bad Luck Mr Trump !)
The problem seems to be one associated with Covid-19 infection. Some drugs that are OK in one clinical situation aren't in another - that's why the full gamut of clinical triels needs to be done even with drugs that are known to be safe in another situation. And when something looks dodgy part way through the trial, they stop it.
I’ve been wondering about the heart thing. I’ve been on HCQ 19 years and can’t remember if they did an ECG when I started, I’ve had so many investigations since then. Anyone else know if we have a routine ECG at the start?
I have had ECG tests at my local hospital, referred by my GP about 5 years after diagnosis. It was linked to my medications but I don't know if linked to the Hydroxychloroquine as I'd been on that 5 years already. I think it was possibly due to change and starting a different medication, but it could have been because of something like my GP was more on the ball, because I'd had over 5 years hydroxychloroquine use, or even perhaps new guidance/ guidelines were changed then. It's certainly no harm in raising it with GP to ask if you should get the ECG test
Thanks fabwheelie. I’ve had palpitations for years which I thought were due to the menopause and just ignore them now. Of course you start to worry when you read about these heart complications. But I would never come off my HCQ voluntarily. It makes a huge difference to how I am in the summer as I’m very sun sensitive.
Most definitely worth mentioning to GP in that case as it's worth the palpitations being on your medical records and a ECG could also set your mind at rest
Thanks fabwheelie. I had a cardiology review probably 15 years ago and think I mentioned them then but 24hr tapes didn’t pick anything up so have just lived with it since.
Cathyan, HCQ actually did cause/worsen palpitations for me. But I can’t go off of it or everything else flares up so I take a beta blocker to keep my HCQ palpitations and baseline dysautonomia at bay. Damned if you do, damned if you don’t type of scenario. Tell your GP about the palpitations esp if they bother you. Made me short of breath. Couldn’t stand em.
That’s interesting Jmiller. On bisoprolol 2.5mg - so maybe that’s why I started it - so far in the mists of time I can’t remember. I can’t tolerate a higher dose because of raynaud’s - and am on sildenafil for that! So many pills!
Yes yes yes!!! I have bad Raynauds as well. I can only take atenolol 12.5. I’m so sensitive to meds. They only come in 25 mg and are hella tiny. I was on propranolol and that was a sledgehammer to my problem and also made my Raynauds much worse. The atenolol isn’t nearly as bad.
Honestly we take one pill, then another to counter that, and another to counter that. Feels like it never stops. But couldn’t manage without my HCQ so I’ll put up with the rest. Sorry that you’re going through the same.
Thanks for sharing this. I think they were doing a proper study (either a clinical trial or a retrospective look at cases) and that showed worse outcome of Covid-19 patients who had hydroxychloroquine as part of their treatment, hence the advice to stop
Medication is always an on balance thing. We take it because the consequences of us not are worse. If they don't work for normally healthy people who have Covid, of course it won't be licensed for use. It's also why docs try and get us to lower doses if we aren't in a flare.
Thank God. Now that is out of the way, people with lupus can access to their medication a bit easier.
Cardiac problems although rare are already known as possible side effects for Hydroxychloroquine , so are liver, renal and eye problems . It’s why those on the drug have regular blood screening to check fir early signs of problems and why they often recommend you take a short treatment ‘holiday’ as your condition is stable .
From what I read the concern with Covid - 19 patients is this Cytokine Storm - when you immune system goes crazy and over produces antibodies that then attack the person ( sounds awfully familiar to me!)... the cascade can cause organ failure in Covid- 19 patients. Tbh it sounds like a Lupus crisis , short of Breath,fever, pain , aching joints etc but of course the cause is Covid not lupus and it apparently happens far quicker .
I don’t think already taking the drug puts us at any greater risks of problems than the next where Covid 19 is concerned tbh ... we are already at greater risk anyway .
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