I have just heard that the Lancet have said that Covid patients who take Hydroxy have a higher death rate. I have been taking 200mg a day for 15 years I’m now worried. I’m also worried it may be affecting my heart. I do have my eyes tested every year at the hospital which my rheumatologist recommended. Does anybody have heart problems due to this drug
Hydroxy: I have just heard that the Lancet have... - LUPUS UK
Hydroxy
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kingsnorth
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Is this in reference to people who are taking it for pre-existing health conditions and were already taking it, or to those who are given hydroxychloroquine to try and treat COVID? I think there is a key difference there and I'm hoping its the latter. Clutching at straws maybe!
It was probably a high dose exceeding 400mg as well. It is important that patients continue with their medications. It they have a query please ask doctor or consultant. Best wishes Kevin
Yes the average dose of HCQ was higher than what is prescribed for lupus. From the journal article:
The treatment groups included 1868 patients who were given chloroquine alone, 3016 given hydroxychloroquine alone, 3783 given chloroquine with a macrolide and 6221 given hydroxychloroquine and a macrolide. The median time from hospitalisation to diagnosis of COVID-19 was 2 days (IQR 1–4). The mean daily dose and duration of the various drug regimens were as follows: chloroquine alone, 765 mg (SD 308) and 6·6 days (2·4); hydroxychloroquine alone, 596 mg (126) and 4·2 days (1·9); chloroquine with a macrolide, 790 mg (320) and 6·8 days (2·5); and hydroxychloroquine with a macrolide, 597 mg (128) and 4·3 days (2·0).
It was to treat COVID. Best wishes Kevin
theguardian.com/science/202...
It is in the context of it being used to treat patients who already have Covid-19. It does not apply for its use in the usual setting where longterm use and the clinical trials done for all drugs have established safety.
This has become a problem because a French doctor claimed, on the basis of some very dodgy work. that hydroxy "cured" Covid. Trump then shouted from the rooftops it was a "gamechanger" and also claims he himself has been taking it.
actually it was an american doctor docs.google.com/document/d/...
Didier Raoult works in Marseilles, he founded and directs the research hospital known as the Institut Hospitalo-Universitaire Méditerranée Infection, and was the first to claim he cured Covid-19 patients with it in a small study published on March 16th:
nytimes.com/2020/05/12/maga...
I hadn't heard of him but looked him up. yes, you are correct.
The study is laughable really - poorly structured, patients weren't under same conditions ... But look what it has led to. They are still recruiting patients in some trials as far as I know - I suppose it is possible it will do something in early stages, we could but hope. But for lupus patients it has been awful hasn't it?
I personally believe that it works, if given early enough, combined with the other 2 meds.I had no side effects (burning forearms) until a year passed so for most people without an autoimmune it is probably harmless mostly. At least better than dying from covid 19 if the formula works. I know quite a few frontline workers use the formula judging from comments on other forums etc. so. there. is. some. faith in the medical world that it works. Hydroxy is cheap, a vaccine on the other hand is going to earn big bucks for the company that develops it.
I agree l think there is something in it. It’s so hard to get hold of I’m down to my last few and my pharmacy hasn’t been able to get anymore. I don’t take zinc
In one study the figures in combo with one of the others had an even worse death rate. They are trying hydroxy in NHS workers in the UK I think.
Totally agree, I think this needs clarifying , is the research saying you are more at risk if taking hydroxychloroquine and contract the Coronavirus particularly if you have any type of heart issue. Constantly on news at moment due to Trump and therefore, I can understand why people taking this medication would be worried. I think this will make people in my situation worry about taking meds.
I currently take 400 mg of hydroxy daily and have been for 5 years, I also have a heart murmur which I have had for 34 years, a diagnosis of SLE, Raynaud's and vasculitis . At present I am not classed as being extremely vulnerable. I have been working at home as work for the NHS with children but husband is going into work and I have not been following the shielding advice for this group just vulnerable group. I will be due back at work in mid June if following 12 week advice, not sure if this will be changing.
If the combination of hydroxy and corona- leads to increased mortality rates for patients just introduced to the drug what implications does this have for those of us on high daily doses for a sustained period of time and should we be shielding more.
News reports are alarming and clarification and advice from rheumatologists is now needed on goverment and nhs websites as to what implications this new research has and if there is any changes to advice for people taking this med.
In the UK there is no change in advice for folk receiving this on prescription for autoimmune conditions. Best wishes Kevin
Many patients were also taking it with a zpack I believe. They had more heart arrhythmia which irronically z packs are already known to also cause fatal heart arrhythmia. So it may have been the combo of both drugs, or very likely the antibiotic alone (which remember already carries a heart warning on its label) or the hcq. If you have tolerated it for years and have periodic eye checks it is ok to not worry about taking it.
Warning to azithromycin's link of fatal heart arrhythmia. aafp.org/news/health-of-the...
It is all so scary and difficult at the moment. One things I would advise is that nothing should be decided on one study.
Whilst I think being educated about your condition and reading the latest research is great and as a health care professional I actively encourage my patients to be engaged in being educated about their condition, it is vital to remember that clinical research is written for people trained in how to write and read it.
Anyone reading research needs to be able to accurately critically review it in order to fully understand it. That basically means pulling it to pieces to find the flaws and biases inherent in any research and coming to a conclusion about the validity of the results. It’s one of the reasons medics find it a bit difficult when patients come in having read one headline and have ‘heard’ about one study in the newspapers and then stop their medication or decide that unless they are given this treatment the health care professional isn’t doing their job properly.
The population in this study was one of patients already hospitalised for severe adult respiratory distress syndrome caused by covid19. Unless you can be identified as being in that population the results are not valid to your individual condition. These patients were already desperately ill.
Medics are using all their clinical reasoning to try and fight a disease that didn’t exsist 6 months ago. Because of the disease process many rheumatoid specialists have been seconded due to the cytokine storms that appears to be the cause of the severe illness and ultimately the death of these poor patients, hence the use of quinine drugs to try and help treat Covid19.
Whilst I understand your concerns the research for taking hydrox for SLE or other rheumatoid diseases far out ways this one study which is not about Rheumatoid patients.
Please speak to your medical team if you are concerned. There are risk factors and side effects for every drug and treatment. It’s about finding the balance between not treating a condition and allowing patients to be ill verses limiting the diseases effects and poor prognosis whilst possible experiencing some side effects - the vast majority of which are mild and better than the disease itself.
I wish you all the best and hope this helps in some way. X
I have read some criticism of the Lancet findings suggesting that the group who were given Hydroxychloroquine were much sicker and had many more co-morbidities than the group who didn’t receive it which would make it unfair to attribute their deaths to HCQ. The suggestion is that sadly, they were dying before they received the drug.
It’s hard to know what’s true or not. We only know what we are told and read and there is so much conflicting opinion out there.
Much of it is agenda driven and political. It seems if people are fans of Trump, they believe hydroxychloroquine works for Covid-19 and if they don’t like him they are desperate to prove it doesn’t.
It shouldn’t be about politics, it should be about what actually works as a valid treatment in the battle against the Coronavirus.
Does it work or not?
Many doctors worldwide appear to be using it. Vladimir Zelenko a Doctor in New York reports huge success in his practice.
He insists it should be given early in the Covid-19 disease and must be combined with zinc. Our bodies usually struggle to absorb zinc into our cells but hydroxychloroquine allows zinc in and it’s the zinc that replaces the virus and stops it replicating.
This Doctor puts it better youtu.be/eVs_EWVCVPc
With regard to our use of HCQ for auto-immune disease, I tend to think, unless you are having side effects, keep taking It.
It’s been around for 50 years, and proven highly effective for SLE.
When I was put on it, my consultant, who is one of our country’s leading experts told me it’s safer than Ibuprofen!!
Best Wishes.
This is very interesting and useful. Thanks for putting this up for all of us. I was found to have a zinc deficiency so take a supplement now. I’m also on Hydroxychloroquine daily so that is all very reassuring. Thanks again.
this is Dr Zelenko's formula. And yes. those in the study were given it when it was already too late sadly. docs.google.com/document/d/...
Hi, same as you I have been on hydroxy since 2005. The dose was 400mg daily up until last year. Been reduced to 200 because of eyesight issues. I also have yearly eye tests at hospital now. I do have liver probs caused by meds. Touch wood, my heart is good. Was not aware HXQ could cause heart problems. Has a dr told you your heart is not right? Anxiety does cause palpitations for some people. Am not trying to patronise you btw. Just you haven't said why. Let's hope we have nothing to worry about, and if you have good support at home, don't leave the house and stick to gvt advise ie hand washing regularly. If you do seriously suspect a heart issue, then of course you cannot ignore it.
Stay safe x
I took it for malaria in Africa for 10 years. My daughter is on her 18th year with Lupus and we are both happy. Best wishes Kevin
Great, sorry if sounded patronising. New on here and don't know anyone other than barnclown. You know, I don't even know who I'm replying to !!! Lol... I've lost this thread. Haha. Thought reply was to 'Kev' anyway Kev with daughter & lupus, malaria, details, I'm glad you are both happy.
Think I'd better have a lie down. Lol...
Hi I have been taken off hydroxy I was on 200mg daily. Recent optician appointment show macular degeneration in both eyes. Went to see hospital and told to stop by rheumatologist still waiting on seeing eye clinic told 4 to 6 month wait really worried as really breathless since stopping them. Heart rhythm changes, pains are back in hips, joints etc. Face develops rash after being in the sun. Vision is blurred, blindspots, and black and white lines in a circle of the middle of my vision. Worried about eyes. becoming worse with no one checking them over.
Hi lillie, am so sorry to hear that. You're caught between a rock and a hard place. Is there nothing else you can take? Because of liver probs, I cannot have immunosuppressant meds. I take steroids, which I know they are harmful, but they do help. I only have 5mg a day as a maintenance dose. I waited over a year for my eye exam, and still haven't had a new appt through. In fact I didn't even get my results. After another appt in the same hospital, I went to the eye clinic reception. I asked for my results. Didn't get them but told I'm being checked annually now!!! For 14 yrs I took 400mg HXQ daily. Although my eye site is poor, at least I can rely on glasses. I was given a booklet at the eye clinic, about macular. I didn't know HXQ could cause it. Funny you notice joint/muscle pain is worse. I had to stop HXQ for a few months and I realised that the pills do actually contribute towards disease management. I now take 200mg daily now, because of liver and eyes. Well I really hope your local NHS is better than mine, and that your appt comes soon.
Fingers crossed that they can make a difference to your sight. It must be very frightening. I would also lobby the hospital now. Best of luck come back and let us know how you get on. X
Thank you so much for your response it means a lot
Thank you all for feedback l was prescribed it 15 years for lupus by Professor Graham Hughes. at the London Lupus Centre. Let’s keep our fingers crossed that this drug might help With Covid as well
Hi kingsnorth, prof Hughes, had just started that clinic, I believe. I was due to see him but he retired from NHS two months earlier than my appt at st Toms. Would have loved to have met him. One of his old team, Rachel Davies, is my rheumy instead. She has been taught by the best IMO. I never have to 'prove' myself when I see her. Lucky for me, she lives near me now and I see her at my local hospital. When a consultant knows explicitly about Lupus, it takes a lot of stress away.
she now
Hi Lisa Graham Hughes is a lovely man l obviously saw him privately at the London lupus as you rightly say he had retired from NHS. I was working at the time and had private medical insurance l was with him for many years until l had to go part time and couldn’t afford the policy he then referred me to St Thomas Lupus Centre and l then saw Dr Kamasta (not sure how it’s spelt) who had been taught by Prof Hughes. Unfortunately now l have to see local Rheumy as London discharged me as I’m stable fortunately, my local rheumy in Kent is in my opinion useless.
Oh I've had many of them. Because I lived a distance away, st toms said I had to have a local rheumy also. It was like a miracle when I got that letter about dr Davies. Obvs I didn't go to London any more, and boy! Did she kick A**E, when she came to Colchester. She couldn't believe the obvious mistakes in my care, and got me on track. Sadly too late for my liver. But I'm hoping for a good outcome.
I know I saw a dr Khamashta or something, and de Cruz, and dr Sanne???? Whatever. Glad you are in remission and hope it continues for you.
Take care.
Oh that’s how you spell his name! I have also seen Dr DCruz and Dr Sanne who l think was training when l met him. I think Dr DCruz is professor now. I also have liver problems l have PBC now. My lupus doesn’t cause me any problems thankfully l take 200 mg hydroxy and 2mg of pred a week just as a maintenance dose.
Well I'm not saying defo spelling lol.. Wow good you have managed to cope on such low doses. Can't say about liver yet. Was f2 6 years ago, then forgotten about. My rheumy has said
"Am I the only one looking out for your liver?"
She sent me to gastro to see if I have chronic liver disease. Saw him last November. He thinks it's advanced liver disease, and has arranged tests. Not heard anymore!!! I know lockdown, stopped it all, but I didn't even get an appt to cancel!!! Anyway I'm ' banging the drum" on Tuesday, as I fear being ignored again for another 6 yrs. will post an update if I get one.
Nice chatting. Take care, stay safe x
I have seen many interviews with doctors who say early treatment with hydroxy has a high success rate. Those studies are mostly on people who are in late stage covid, and too late to help them. Not that it kills them. I have also heard studies that say lupus patients on hydroxy already seem to be less likely to get covid. It's gotten very political here in the United states. As soon as Trump stated there was high hopes for hydroxy in studies he saw for treating covid, there was a rush to discredit him with numerous late stage covid studies.
Chances are you have PBC which goes hand in hand with lupus. Mine was picked up by my gp who noticed that my liver results were never in range he sent me to a gastro consultant. I had biopsy pbc discovered and l was put on my meds. My bloody rheumy never picked it up even though he saw my liver results were consistently out of range, he should have picked it up straight away and referred me on. If l can help in any way just message me. Take care
Do you have lupus Kevin
My daughter has Lupus. That’s why I joined Lupus UK. For my sins I’m currently chair of the Charity 💜. Best wishes Kevin
They have said that hydroxychloroquine is a safe drug to take for malaria, RA and lupus even though it seems to be causing more fatalities in covid. I read that covid patients are given 1,200mg at the start and then put down to 800mg as a maintenance dose. I haven’t double checked these figures but have seen other sites say that covid patients do get a much higher dose than the lupus ones. This is what’s thought to be causing the extra fatalities. (I will try to find the sites for this info but I’m busy trying to sort out something on a new Facebook APS group that is starting up, so later this evening I’ll have time I hope).
Keep taking the hydroxychloroquine if it’s helping you and not giving you side effects.
Nope iii sure dooo not!!! Im supposedly on remission but there are days and nites that i hurt or my hands swell or my knees or ankles swell! Ive been taking the hydroxy for quite sometime nd i have lupus also nd other conditions!!! I take naproxen liquid gel caps for pain issues,also.
Fascinating reading all these. Been on hydroxy for nearly 30 years. Just started yearly eye exams at hosp.
Met Prof Hughes at Exeter conference, lovely man . My cons is not a Lupus specialist. Moved from Southampton which is a centre of excellence.
Also on Azathiaprine and low dose steroid . Only side effect is IBS , really annoying.
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