Newbie, saying hello and seeking advice. - LUPUS UK

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Newbie, saying hello and seeking advice.

Cordie1
Cordie1

Hydroxychloroquine newbie.

Hi all, I'm Cordie and I'm new here. I was hoping for some info regarding the above. They tell me I have SLE and have prescribed HCQ. I've read so many negative things about this drug I'd really like to hear from others for whom it has proved positive if possible.

Also I've read I'd need regular monitoring but no medical professionals are mentioning this. Not sure what to do.

Thank you

49 Replies

Hi Corrie, first of all welcome to the forum. You will find lots of support and helpful advice here🙂so feel free to ask whatever you need . I don’t take HCQ but do know others that do, who find it does help with symptoms. Apparently it take a few weeks to take effect though. I understand it is a pretty safe drug that’s widely taken by people with mild to moderate lupus. In terms of check ups. It’s important to have your eyes tested whilst on it (eye screening not opticians testing). It can have the very very rare side effect of affecting your eyes after long use. I do know someone this happened to so it is important to do this (i think its recommended within first 12 months). Please don’t be worried as it is extremely rare, but if it hasn’t been mentioned, do ask about this. I’m sure someone who takes it will be along shortly. This NHS health sheet explains:

mft.nhs.uk/app/uploads/site...

Cordie1
Cordie1 in reply to panther50

Thank you for your reply panther. My Rheumatologist just told me to see an optician before I start to take it. I'm not sure what to do, or who to ask about screening.

Spotty-ewe
Spotty-ewe in reply to Cordie1

The reason they advise you see an optician before you start taking the drug is so that a direct comparison of your eye health can be made at your next optician appt after starting the drug.

amc282
amc282 in reply to Spotty-ewe

Yes, a baseline from which to monitor.

Tempname
Tempname in reply to Cordie1

Just phone up your local optician and ask do they have an OCT machine (the big chains have them as standard). It basically takes a very detailed scan of your retina that can show up any damage. You're advised to get this annually, and anytime you notice any changes to eyesight, colour perception, night vision etc.

daffodill2
daffodill2 in reply to Cordie1

I have been on Hydroxy for years I have been fine just make sure you have your eyes tested regular take care

Cordie1
Cordie1 in reply to daffodill2

Thanks Daffodil2

Hi.hydroxy is an anti malarial drug used to treat lupus and it works by damping down your immune response. It can cause photosensitivty so you must cover up head to toe wide brimmed hat, factor 50,long sleeves etc all year. Panter50 is referring to retinal toxicity so you must have eye tests every year you should be referred to the hospital eye clinic as opticians cant do the colour test required..my hospital has only recently got the equipment to do the tests so opticians have done mine every year so far.ive been on hydroxy for 2 1/2 years.it takes 8 weeks to start to work 6 months for full effect and is the foundation of most lupus treatment.if it doesnt help then they may add another immunosuppressant in at a later date.lupus puts you in group 6 for vaccination as hydroxy isnt a medication that increases your covid risk.those of us with the extra immunosuppressants and/or steroids are group 4 and have been shielding. X

You can have an eye test at the opticians. next time you see your rheumatologist ask if the hospital do hydroxy screening or you could ring the eye clinic at your hospital and ask if they do it and do you need a rheumatology referral

Thanks Spanielmadlady. x

Hi,

Some helpful and useful info from the John Hopkins Lupus Center (Centre) US website on HCQ and corticosteroids:

hopkinslupus.org/lupus-trea...

hopkinslupus.org/lupus-trea...

I found the info highly readable. Trust it helps?

Some of the info on brands may be slightly dated or applicable only to the US.

Xx

Really interesting and informative thank you x

Thanks Spanielmadlady. I thought it was an ophthalmologist at the eye hospital not the optician, but I wasn’t sure. They do a baseline test. I can see a thread HCQ side effects about a month ago. I get the impression not all rheumatologists remember about this, but please tell me if I’m wrong. Your GP should be able to do the referral to the eye hospital, if the rheumatologist hasn’t.

I was sent as an emergency to the hospital eye clinic about 3 weeks ago with scleritis by my gp.When taking down my meds history of course the hydroxchloroquine came up and they said "why havent we seen you before ? " as ive only just had my eyes tested for new glasses they are going to call me back next year.the opticians can do it . They now do the oct test but they cant do the cambridge colour test.id say the opticians is a good alternative but if the hospital can /will do it all the better . Xxx

Hello my dear EARTHLINGS & panther50,

The main difference between an optician and an ophthalmologist is this 🤔. ☝️🤷🏽‍♀️🤷🏻‍♂️🤷

A typical high street optician may not necessarily be registered with the Royal College of Ophthalmologists and therefore not medically qualified to diagnose eye diseases eg HCQ induced maculopathy or retinopathy etc.

Hospital eye clinics nearly always have ophthalmologists, medically qualified eye doctors working there. Ophthalmologists are therefore medically qualified doctors who choose to specialise in eye diseases and disorders.👏👍

High street opticians (technicians) are there to examine eyesight mainly and to sell glasses. There are of course ophthalmologists that also work in the high street and private clinics.

Both places can have the the most up to date eye examining equipment but it is the expert and clinically qualified ophthalmologist that actually does the diagnosing not the equipment.

I am a lupus sufferer and also have retinopathy (background), maculopathy, epiretinal membrane and have had laser treatment in both eyes (scary).

All have been diagnosed and treated by a consultant NHS ophthalmologist, hospital based. I personally will not go to a high street optician’s for this work. Far too risky.

Trust I’m not being too pedantic here, my lovely Earthlings?

As lupus sufferers on HCQ we deserve to be treated and examined only by ophthalmologists.

Take care my lovelies. Your eyes are precious.

❤️☝️

Hi thanks so much for that explanation. I would have guessed ophthalmologist=medically trained=eye hospital/clinic. & opticians= eyetests trained but not to same degree medically=high street opticians but wasn’t 100% sure so didn’t want to give wrong advice!

Although I was never on HCQ, I have been to eye hospital for all those tests. I had problems with my vision (never was sure if it was lupus or the meds) anyway very different to going to opticians so I agree 100%. I think if you’re prescribed HCQ only fair the NHS are also responsible for necessary care of your eyes. I had heard from friends on it that rheumatologists don’t always seem to remember to mention it. After my friend lost some vision it made me realise how important it is.

Just like if you’re on steroids you should get a DEXA scan.

BTW Cordie, my GP referred me to eye hospital & it came through quickly.

P.s. Troublesomelupus am I an 👽? That would explain a lot!😂

Your PS prompted me🤣.

No, we’re not 👽 👾!

We just have these millions of unfriendly, harmful autoantibodies that keep on hurting us.

They are the 👽👽👽👽👽s .

My prayer to these aliens, “as an 🌍 ling , “Please 🛑! Give me and us all loopies a good break !”😥🤣☝️...or at least attack something else!!

Ha ha!i think of my immune system as naughty little 😈😈😈😈 when they attack me but 😇😇😇😇😇when they get it right and protect me against things like COVID.😀

Hello, first of all a very warm welcome to the forum. I’m sorry to hear you’ve been diagnosed with SLE but you’ve come to the right place for support. I was diagnosed with SLE 9 years ago and was prescribed Hydroxychloroquine - 2 tablets per day. It has been brilliant. I used to suffer with regular migraines, nausea and inexplicable pain in muscles and joints, but all this has settled down and the first two are now extremely rare occurrences. However I did find over time I began to suffer gastric problems and an endoscopy found I had gastritis but there was no obvious reason why. It was on this forum I then discovered a few others had the same problem until they switched to the Zentiva brand of Hydroxychloroquine . It was difficult to find a pharmacy that would order that brand for me but for over a year now I’ve been on that brand only and all my gastric problems have vanished. I was on the Bristol brand before that but we are all different and some people have no issues with it at all.I am presently on 1 tablet per day but was for a year down to 1 tablet 3 times per week, so don’t despair you might get down to a low dose in time too. Mine went up to 1 per day due to a flare I had18 months ago and my Rheumy has left me on it until this pandemic is over.

I don’t get regular monitoring, never have, but any concerns I’ve had with my eyes have been dealt with very quickly by my optician and have been found to be unrelated to the Hydroxychloroquine so far. I’m called every year for eye tests, and I see my Rheumy every 6 months when all the usual bloods are taken. In all the 9 years I’ve been diagnosed with SLE I’ve only been seen by the Ophthalmologist at the hospital once, but opticians do very detailed tests now and often a few extra (as mine does) when they know you take Hydroxychloroquine . I hope this reassures you a bit Cordie. We are all here to help you so don’t hesitate in asking anything at all that worries you. Take care. 🤗x

Cordie1
Cordie1 in reply to Spotty-ewe

Thank you Spotty Ewe x

Hello Cordie1 welcome to this wonderful forum. Such lovely people. I was diagnosed with sle lupus in August and given hydroxychloroquine and steroids. I have had no problems taking the hydroxychloroquine it takes approximately 12 weeks before it starts to work. I also have regular blood tests since I've been on it. Hope this helps.

Cordie1
Cordie1 in reply to JCZW

Thank you so much. I really appreciate the re-assurance. ❤️

Oh my goodness! Thank you all so much. I really appreciate you taking the time to reply to my query.

What a wonderfully friendly and helpful group of people I have found. (Almost worth being diagnosed!) ❤️

Feeling a little more positive about starting the HCQ now. They initially offered me steroids about 12 months ago, but I have had a really bad reaction to them in the past so didn't want to take them.

They've also offered Coelexib as the other things haven't worked, but I'm not keen on that either.

Won't normally even take paracetamol and have always been so fit and active, well until 15 months ago, so was very resistant to accepting I actually had lupus.

Now, given the state of my face, after a 'push' (been in a wheelchair for 12 months now due to painful swelling in leg joints) out yesterday, whilst wearing factor 50. I'm thinking maybe they are right and I really do have to try the HCQ.

Just worried all my hair is going to fall out as well!

😪

panther50
panther50 in reply to Cordie1

Oh dear you have been through it. I think HCQ is a good place to start. I’m on low dose steroids & felt exactly the same about taking meds before my diagnosis, but with successful treatment, it really can improve your quality of life. Many people can also taper down as SLE gets under control. I was so worried about my hair too. I don’t know if it helps but everyone in my local lupus group has really lovely hair! Many of the things you read early on scare you to death, but I just want to let you know they don’t all happen. 😀

It is a lovely group so hope you feel at home now x

Tiggywoos
Tiggywoos in reply to Cordie1

Hi Cordie and welcome 🙏😊. Hydroxy stopped my hair falling out . You’ve had a terrible time of if it so you’re in the right place for understanding, love and very importantly information the drs don’t give you . Big hugs xx

Cordie1
Cordie1 in reply to Tiggywoos

Thankyou Tiggywoos.

My Rheumatologist said the HCQ might help with the fact that I have no, never have had any, body hair. Well except for on my head and eyebrows.

It never really bothered me. In fact I quite liked the fact that I've never had to wax or shave. When my eyebrows became incredibly sparse a few years ago, I just assumed it was down to age or my underactive thyroid. But it seems it can be a symptom of Lupus?

I've always blamed my thyroid for the fact that my nails are like paper and grow at about 2cm per year, have been known to just drop off completely very occasionally, but maybe the thyroid is not the cause of that either.

My (head) hair is the thing I was concerned about losing, really. It's really encouraging to read your positive experience.

xxx

❤️

Welcome! You’ll find lots of support here and so many great ppl with helpful experiences :)

HQC is a very standard, very safe medicine that many of us are started on. It does take a long time to work in some ppl (> 3-6months) and there are various ways docs prescribe and monitor it.

Personally, i didn’t tolerate the tummy side effects but that’s only because I already had serious gastro problems. I do think it helped with my joints and muscles, but not enough up balance side effects.

That being said, that’s my personal exp. Many ppl benefit from it as a primary or add-on.

As you go along, you’ll start to learn more about treatment and management. Medicines will get less scary, too.

Again, welcome!

Cordie1
Cordie1 in reply to katidid

Thank you Katidid. x

Hi Cordie 🤗 welcome to the group 💐As others have said u will find us a very informative supportive group..u will find out more about lupus here than from any doctor (I have for sure)...from people who live with lupus and other autoimmune diseases 24/7!!

One of the things that I'll mention is that when I started taking hydroxy in 2017 I found that it gave me heartburn which is one of the side effects. You'll notice in your pack of tablets that we can't take indigestion remedies for four hours after taking the drug. In order to combat the heartburn I take mine with a glass of goats milk n that's sorted the problem out for me.

Good luck 🍀

Kat 🌈😽😽xx

Cordie1
Cordie1 in reply to Krazykat26

Wow, that's really helpful advice thank you. I'm already on omeprazole because ibuprofen had such a bad effect on my tummy when I tried it. So I'll take that on board. x

Just a quick welcome and to say this medicine has helped my rheumatoid symptoms a LOT and I’ve had no side effects in 3 years...except my skin tingles if I’m in the sun! I go to the optician every 12 monthsGood luck! X

Cordie1
Cordie1 in reply to Ssmart

Thank you so much Ssmart. ❤️

Hello Cordie1,

Side effects with Plaquenil are quite rare but they do happen so it's important to see an ophthalmologist once a year. I'd like to echo what has been said about opticians, it's best to have it checked by an ophthalmologist. You may be seen by different specialists as needed and depending on lupus flare ups. In my experience, doctors in a hospital setting tend to communicate better with eachother and your medical records are all under one roof. I am a lupus veteran and have been on Plaquenil for 25 years along with immunosuporessants. Plaquenil really made a difference to my joint pain and alopecia. It took a while for it to kick in.

Though I have not been very active in this forum for a while I have always found support here!

Take care 🙂

Cordie1
Cordie1 in reply to lind126

Thank you Lind126. Is Plenquil the same as HQC?

Krazykat26
Krazykat26 in reply to Cordie1

Yes it is 🌈😽😽xx

Cordie1
Cordie1 in reply to Krazykat26

Tx

Hi Cordie, I have been taking Hydroxycloroquine for 14 years and never had side effects, although it took around 8 weeks to kick in. It stopped my joints swelling completely, and greatly helped my fatigue. I have always gone yearly to the optician, a large chain , and they have always paid particular attention to the area in my eyes that can very very rarely be damaged by this drug. It was only a couple of years ago that my Rheumatologist referred me to the eye department in hospital. He wanted to check for himself for his records. He said the rare eye side effect from Hydroxycloroquine is slightly more likely the longer one has been taking it in larger doses, although I only take 4 tablets a week now. I hope you get good results from Hydroxycloroquine too!

Cordie1
Cordie1 in reply to Cornetgirl74

Thank you Cornetgirl74. That is so good to read. xx

My miracle drug changed my life from pain and no energy to normal life ish. Have you eyes checked regularly and take on a full stomach should be fine.

Cordie1
Cordie1 in reply to Hamptons

Thank you Hamptons. x

I am on it - 300mg a day - and was concerned at first, so much so I delayed taking it. I have LSSc with overlaps of other conditions. I wish I had started when it was first prescribed. It has really helped with pain and stiffness. I have been in it since late 2018/early 2019. I was worried about the eye issues, but, they are rare, so they tell me. It occurs in some people with a build up overtime of the drug in the system. When you start it the Rheumy should also organise an appointment with the eye hospital for you to have a baseline test and get your eyes tested annually. Tell your eye doctor what medication you are starting and they will partner with you to keep things in check. Take care.

Cordie1
Cordie1 in reply to amc282

Thank you amc 282. I have just phoned the hospital rheumatology helpline number I was given to ask about the hospital ophthalmologist.. Am waiting for them to get back to me. ❤️

amc282
amc282 in reply to Cordie1

They nay just tell you to go to your optician, but if you have any existing eye conditions, like me, I would push for a more comprehensive exam. Good luck and take care. This is a very supportive group.

Cordie1
Cordie1 in reply to amc282

They've just phoned me back. Thanks for the advice. And yes I am totally gobsmacked by what a wonderfully supportive group this is. ❤️

Hi Cordie and welcome. I took Hydroxychloroquine for over nine years without incident. I was on 400 mg daily. A Rheumatologist then upped my dose to 600 mg and I developed issues with my sight so I had to come off it. It definitely helped my symptoms and I have been significantly worse off it. You may feel queasy initially and you need to have your eyes tested regularly and let the Optician know that you are on it so that they can pay particular attention to your macular. Some brands of Hydroxy such as Quinorec cause gut problems. I hope this reassures you that it is one of the safest drugs but all drugs have some sort of side effects. Good luck xx

Thank you CecilyParsley. It really does reassure me. ❤️

Hi Cordie. I was in a very similar situation as you a few years ago. I was diagnosed with SLE and prescribed hydroxychloroquine. I’m still on these today and they have really helped me with fatigue. I used to fall asleep on the sofa every night at 6pm and sleep all night but now I can manage my tiredness, which in turn helps me to concentrate and focus better. I also feel more able to do more physical things such as going out with friends (although can’t really do that currently) and exercising.

I was told most negative events happen after at least 7 years I believe. But it’s important to get bloods done every few months just to make sure everything’s ok.

Hope this helps and makes you feel better about starting a new medication.

Welcome to our Lupus group

Kind regards,

Georgia 💜

Cordie1
Cordie1 in reply to Nerdvana

Thanks Georgia,

for your lovely welcome and positive message. The advice and experiences shared on here, by you and others, have made me feel so much better about starting the HCQ. I'd read so many scare stories I'd been delaying and then delaying some more. It's so good to know that this stuff actually does some good!

❤️

Hi and welcome I've been taking this medication for 5 years now with no side affects. I take a 200mg tab morning and night. Some times I reduce it if I'm feeling good. Of course I've discussed this with my rheumy and he's fine with this. On my feel good occasions I take one per day and two the following. That said and done I normally go back to taking 2 per day as I can at times feel the difference in cutting back. My rheumy has said that long term use of this medication is safe. Hope this helps. Oh and an optician eye test is advisable on a yearly basis .

Thanks bru-no1, It does help and is appreciated. ❤️

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