Hydroxychloroquine and Covid 19: So now, from worrying... - NRAS

NRAS
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Hydroxychloroquine and Covid 19

Brychni
Brychni

So now, from worrying about a hydroxychloroquine shortage those of us taking it can worry about increased risk of complications should we catch covid 19.

theguardian.com/science/202...

46 Replies
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According to Reuters, 40,000 randomly selected health care workers around the world are to test hydroxy and chloroquine to see if they prevent Covid infection. I suspect the risk is for people like Trump taking it without monitoring.

Ajay575
Ajay575
in reply to Stayloose

Im sure trump is well monitered more than anyone

Lolabridge
Lolabridge
in reply to Ajay575

... even if he would not want to admit it!

MarshaM
MarshaM
in reply to Ajay575

He's lying, what a dumbass

Ajay575
Ajay575
in reply to MarshaM

Ha ha ,do you think he never took them ,the way he winds the press up i thought that too but he did show a letter,

Stayloose
Stayloose
in reply to Ajay575

He might be advised but does he take any notice I wonder.

Ajay575
Ajay575
in reply to Stayloose

Probaly not ,with his health maybe ,who knows with him

But you are on different dosages and checked. It's the idiots just taking it without check ups! X

Brychni
Brychni
in reply to allanah

Yes I wonder how much has been given in these clinical settings?

allanah
allanah
in reply to Brychni

Indeed !

helixhelix
helixhelix
in reply to Brychni

Something like 600mg twice a day.....not 200mg.

JFlay
JFlay
in reply to allanah

I started on it 10 months ago (I'm not on anything else). I've had my bloods done once since then. I've never had my blood pressure or weight/height checked by the hospital. CV health bothers me as both my dad and brother had heart attacks, the rheumy told me to see my GP about it, not had a chance since lockdown. I was told to get an eye test at the opticians. I don't feel 'checked' at all 😕

allanah
allanah
in reply to JFlay

Then call your gp or rheumy and ask how often you should get screened in their practice . And could that be arranged xxx I have 6 uncles , 2 cousins, my dad, my brother , my sister all gave RA and some had heart conditions and my FP checks me yearly , bp pulse height weight sugars liver kidneys ecg and is generally very helpful x

Brychni
Brychni
in reply to JFlay

That's really odd because you should have been given an appointment within 6 months of starting hydroxychloroquine for an in hospital eye check. I too misunderstood this and went to my optician but he told me most don't have the right equipment and I should be getting a letter from rheumatology, which I did. I'll get an appointment soon.

woodstar1
woodstar1
in reply to Brychni

Really? I've been on it for 5 years. I was told to just get my eyes tested regularly!

watcher56
watcher56
in reply to woodstar1

I was on it for 12 years and the only eye check was through my optician, nothing other than the standard check up

Last year my rheumatologist told me to carry on with the yearly eye checks at opticians but I could expect to get a check up with the ophthalmologist at the hospital at some point. She said as it was new guidance it would take a long time to give everyone an appointment!

Brychni
Brychni
in reply to woodstar1

It was one of the warnings when the consultant diagnosed me. I was so stunned I didn't hear the bit about hospital eye appointment and went to my optician.

woodstar1
woodstar1
in reply to Brychni

Yes, I have definitely not been told to go to or been given an appointment for the eye hospital, just told to go to the opticians once a year. Mad!

JFlay
JFlay
in reply to woodstar1

Yes same here.

RA2011
RA2011
in reply to woodstar1

Gosh my RA doc said I'd have to come off it after 2 years.... I'm waiting for opthmology appt at hospital...... Lizx

NannyOgg15
NannyOgg15
in reply to JFlay

Hi. I’m on hydroxychloroquine. For the first 4 months it was fortnightly blood tests. Now it’s monthly. If you don’t get them done. The drug is stopped. As another contributor said, there’s also a yearly test at the eye hospital. The optician does not have the specialist equipment. I suppose it depends on which health authority you are under. Though the NICE guidelines should apply to all of England and Wales.

Brychni
Brychni
in reply to NannyOgg15

My next rheumatology appointment is in about 4/5 months (6 from diagnosis appointment) and I haven't been told about blood tests. Not even been mentioned.

NannyOgg15
NannyOgg15
in reply to Brychni

. If you live in the UK, you could try contacting the hospitals Rheumatology helpline, they should help you. Or contact the Rheumatology consultants secretary, they’re normally quite helpful. I’m no expert but I can’t imagine the monitoring and testing should vary that’s much across the health trusts.

JFlay
JFlay
in reply to Brychni

No, it doesn't need regular blood tests, just occasionally.

KittyJ
KittyJ
in reply to Brychni

Brychni I’ve been on it nearly 30 years and only had a hospital eye check at the start and yearly opticians checks since. No blood tests as I was told it doesn’t need monitoring like some other meds.

I have been on it for 26 years and never had blood tests! I am good on it too x

My anxiety could certainly do without the media screaming HYDROXYCHLOROQUINE WILL DEFINITELY KILL YOU over and over again.

JFlay
JFlay
in reply to Smelliott

Yes, I'm with you on that! ☹️

allanah
allanah
in reply to Smelliott

Well. You know what the media are like , it wont, you are getting yours officially prescribed and monitored . !!! They are just trying to tell folks not to get it without supervision, like any drug!!!

Brychni
Brychni
in reply to Smelliott

I know!!

MadBunny
MadBunny
in reply to Smelliott

Agreed!

Well it must be a b****y slow death. I've been on it for at least 15 years and haven't come over all dead yet. I know it's easier said than done, but I try not to stress about that particular aspect of things as I trust my doctors to know more than the tabloid press. Instead, I'm hoping that if I am unlucky enough to get the virus, the Hydroxy will help me get over it a little easier than I otherwise would.

An interesting broadcast by the NRAS last night on face book asking questions to a Rheumatology consultant who said there was some research going on Hydroxy as it may help , they will get supplies from a different source to us.

There is some suggestion that our drugs may protect us as it seems that fewer people in hospital are needing icu treatment.

I am replying to myself, but having heard what the papers are saying I am more confused

Ajay575
Ajay575
in reply to vonniesims

Try not be confused it could be true and sometimes papers jump on the band wagon in this case Donald trump got presribed them ,little behold nearly the whole world are looking into them and some stock piling even the uk

Brychni
Brychni
in reply to Ajay575

However, pharmacist at Boots told me even UK GPs are prescribing it against advice.

Personally I'm limiting my exposure to the news and choosing the sources carefully. I hear 10 mins or so of Radio 4 news maybe three times a day, read the i most days but often just scan Covid articles rather than reading them properly and occasionally catch a few minutes of the 10pm BBC1 news. I take it all with a pinch of salt reminding myself that everything is coming through the filters of politicians and media and all of them have their own biases and agendas. I find that a little bit of healthy cynicism helps me to keep grounded.

I've been on Hydroxychloroquine for about a year; I've had regular blood tests but that's mainly because of the Methotrexate I'm on. I was told to have an eye check and found a local optician who does all the checks recommended so had a "baseline" reading taken with a view to yearly appointments although that's obviously off the cards for now.

I have a good GP and surgery which helps and have been lucky with my rheumy clinic too but I would contact them if I felt that I needed to have more monitoring, even if it was just for my peace of mind.

With RA you cannot win. I’m stuck right now between trying to clear up an MRSA skin infection and calm down my arthritis, or watching this infection take hold again - another antibiotic added to its list of those it’s now immune to. Dermatology want me to take doxycycline to clear up the infection, which prompts a phone call from rheumatology who tell me to stop doxycycline and get back on my MTX. 🙁

dawkin_S
dawkin_S
in reply to Embriony

One thing the consultant was saying on the NRAS Facebook live the other night was about how things have changed/are changing in how treating patients works. On the plus side he was saying how the consultants and GPs were able to communicate much better and get things sorted more quickly.* Maybe with specialists from all fields working together on covid wards they will forge better connections there too, and communicate with each other about shared patients' treatment rather than us having to act as go-betweens. We can hope!

*May not apply with your consultant/GP of course! ;)

Embriony
Embriony
in reply to dawkin_S

I do know that after diagnosing the disease now, they hit it with everything they’ve got, as this prevents the joint damage being as great. In my day they had a softly softly approach and started with sulphasalazine (sp) to see if that worked. Once it stopped working, it was MTX etc etc. I’ve had a lot of surgical interventions, most if not all could have been prevented. Twenty years ago there wasn’t the option of biologics but I’ve heard of people getting them straight away now.

Brychni
Brychni
in reply to Embriony

when I was still in denial in the early days after my diagnosis I was googling a lot especially about the ultrasound scan I had and why it is a better diagnositc tool over blood test...I happened upon information about the guidelines for treatment after diagnosis and it was THREE DAYS. That's how quickly things can progress.

Embriony
Embriony
in reply to Brychni

Very true! I’m seropositive but my first blood test (done by my GP) was negative. Apparently this is common.

Im fed up with the media reporting on covid and try to avoid it as much as possible. Re hydroxy though,it would seem that the reporting is about idiots like DT, and its use in treating the virus rather than its use for RA.

Embriony
Embriony
in reply to MadBunny

DT? Oh, Donald Trump of course! Well, (assuming you’re from the States) you guys voted him in. 😀

Re your comment on hydroxychloroquine reporting, and the emphasis on its possible use in treating Covid-19 etc with no mention of current use for RA, I have to cut the media some slack here. What would the public as a whole want to hear about? Covid-19 being sensitive to HCQ, or RA patients who successfully take it?

What does concern me is the possible “panic obtaining” of the drug, with demand through the roof meaning that stocks run out for the people who need it and where there is proof that it works.

MadBunny
MadBunny
in reply to Embriony

No Im not American.

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