Are you now worried about taking hydroxychloroquine?

[Frankiefocus]

Hi everyone I have been taking hydroxychloroquine for 2 years now and since the Covid-19 outbreak there has been a lot of negative press about this drug. What are your thoughts on this?

[Caza]

Hi, I’ve been taking Hydroxchloroquine for 8 yrs now with no problems whatsoever. I get my eyes tested twice a yr one by my optician & the other one at the hospital. There’s negative sides to all drugs but no not worried at all. Hope this helps.

[Cook345 in reply to Caza]

Hi I am new here and am on hydroxychloroquine for 3 years. I was never offered an eye test and after reasearching requested one on advice of my optitian. The hospital did two over two years but have now said they will only do a test every five years. Also put on too high dose for my weight making damage to eyes more likely so reduced it to recommended amount. It sounds like you have a good team.

[Caza in reply to Cook345]

I only had them tested at the hospital after 5 yrs of taking Hydroxchloroquine. Now its once a yr. But my rheumatologist strongly recommended that I got them tested before taking the drug & then 9-12 months there after. I have a very good optician but there’s boots or spec-savers. I would strongly recommend you continue with the testing. I take the highest dose. I’ve tried lowering it but with disastrous results 😖

[Cook345 in reply to Caza]

Thanks for your reply. Yes you are right you are meant to have them tested before being prescribe Hydroxychlorquine but like you I wasn't tested. Just reading posts there does seem to be quite a difference in how patients are treated in different areas. I am now taking 300mg a day instead of 400mg and I seem to be ok with that - so far!

[Caza in reply to Cook345]

I take 400mg a day any less causes me problems. I guess we have to weigh it up & look after ourselves.

[sylvi]

Its the only drug i am taking at the moment for my ra so am i worried about taking it, no i am not to be honest.xxxxx

[Boxerlady]

Not worried at all. The negative press is about people taking it at different doses to us, not prescribed by medical experts (whereas ours understand our conditions and the drug) and without the careful monitoring we have which would quickly flag up any possible issues; personally I think that there's no comparison.

[KittyJ]

My only thoughts are it works for me and I’ve been on it 30 years. I’m not at all worried.

[Kalimers65 in reply to KittyJ]

Hello Kitty I’m due to start hydroxychloroquine tomorrow, Monday along with Sulphasalazine which I’ve been on for 20months and to be honest, I don’t think Sulphasalazine is helping me much. I’ve had a terrible flare for about 4 months, both knees, hips at the back and a toe on each foot thrown in for good measure! Have you found hydroxychloroquine really effective ? 30 years is a heck of a long time so I guess you have. I’d appreciate any tips for taking it. Ann

[KittyJ in reply to Kalimers65]

Hydroxy didn’t do enough on it’s own eventually so mtx was added. I have tried to stop hydroxy completely as I’ve been on it a long time but I haven’t managed to get off it. I only take 1 tablet a day though now. I must add I’m on a biologic too now 🙄. As for tips , I just take it, nothing special. I hope it helps you although it can take a few months to work. . Let us know how you get on 🤗 🤞🏻for you.

[Kalimers65 in reply to KittyJ]

Thanks for replying Kitty.

[Neonkittie17 in reply to KittyJ]

Wow that’s amazing it’s kept its efficacy and worked so well for so long. Well done 💗

[nomoreheels]

The press isn't reporting on HCQ being used as it is in Rheumatology, at the doses & regularity we're prescribed it, in fact it may as well be a different med entirely by comparison. Nor are those taking it being monitored as we are. When you take all these into consideration & think how the press love to jump on the negatives, well, that makes a good story doesn’t it?! Bad news sells but you know different, HCQ works very well for many with RD so please don't worry. If the Rheumatology profession was concerned about anything they'd halt prescribing it & that hasn't happened so be assured all is well & take such reporting with a pinch of salt & not relative to us at all.

[AgedCrone]

The negative comments were referring to the drug being taken by people self prescribing & not under medical supervision.

The regulatory authorities appear quite happy for it to continue to be prescribed...otherwise it would have been removed from the list of approved drugs in the UK.

If it is suiting you & your rheumy is happy to prescribe it...,I wouldn’t be worried if I were you.

[allanah]

Not at all worried, we are monitored carefully and let's face it most drugs have side effects. This one stops your body becoming more I'll and treats the awful disease RA can be . So I happily have it, Mr Trump caused problems by telling people to have it unchecked , that was the problem, not the drug.

[helixhelix]

Hydroxychloroquine has been in use for over 60 years for RA. In all that time, apart from very rare cases of retinopathy, it has not caused problems. The exception is of cause those who have immediate problems with it, but again that’s not that common as it is one of the best tolerated of the RA drugs.

So no, I wasn't’ worried about it.

[Suzannejames in reply to helixhelix]

Hello everyone, not been on for a while now. I've been unwell but feeling a bit stronger now. I've been on Hydroxychloroquine for about 11-13 years and I stopped it for about a year. After a few months it had worked its way out of my system and my connective tissue was playing up and of course that was agrivating my COPD and that was why I was constantly getting ill. After a year I realised that I really need to get back on them. It's taken a couple of months to cick in but only now feeling the benefits. I have to see a consultant because it has caused damage to my eyes because I hadn't had them checked every year. My doctor hadn't made any arrangements for me to have them checked, it was the specsavers opticians that picked it up but, that won't stop me tacking them as I have found the benefits of taking them, if you know what I mean. They might put me on a different brand. I'll just have wait and see what happens. I'll let you know. Hope this might help some of you. Suzanne xx

[KittyJ in reply to Suzannejames]

I’m surprised that you have been left on it when it has damaged your eyes Suzanne. Why do they think it won’t continue to damage them? I’d be a bit concerned if it was me😔

[Suzannejames in reply to KittyJ]

Hello Kitty J. Many thanks for your reply. Well all this happened last week so I'm waiting for the outcome of it all. I also have to have catteracs removed. I'm a bit concerned about that as I have sjogrens which means my eyes get very dry and gritty so I'm a bit worried about infection after having them done. I woke up about 8 months ago and my sight was all cloudy and blurred. I sat there rubbing them thinking it was a sleep thing so phoned specsavers and they said that there was a bit of a catterac there, he told me to watch if any difference occurs. So that's when he saw the damage to something at the back of me eyes. Thanks very much for your concern. I'll just have to wait for my appointment to know more. I'll let you all know what's happened. You're all so kind and caring on this site, as you all know what pain is and understanding what we all go through. Kindest regards to you all. SuzanneJ. Xxx

[KittyJ in reply to Suzannejames]

Ah I thought you had been continuing on it afterwards. Retinopathy is a very rare side effect, I’m sorry you are one of the ones to get it. Hopefully it’s been caught before too much damage has occurred. Let us know how you go 🤗

[JFlay]

Hi, I've been on it for just over a year and it's working well for me. I have my eyes checked regularly. I don't feel worried. My consultant told me that Mr Trump has shares in a company that makes HCQ 🙄

[Caza in reply to JFlay]

I’d heard that as well 🤦‍♀️

[Lizard28]

I’ve been taking it for about 5 years I think, came off it to have chemo treatment then back on when it finished. I’ve not had any major flares whist being on it, but my Rheumy doc said she is only giving me another year then cutting down to one tablet, only time will tell if this works. Strange though when it seems to be working for me.

[joanne2]

I have been taking Methotrexate and Hydrox for10 years and have an optician check at Boots once a year. My doctor hasn't said anything about eye appointments. I didn't even know the hospital did eye tests. my vision has got worse this year, I am 72. How many eye appointments a year am I allowed on NHS does anyone know. I find it difficult asking my doctor anything these days as appointments are all on the phone.

Wishing everyone well x

[silentpool in reply to joanne2]

I have eye tests once a year because I have had a branch retinal vein occlusion with macular odema. I asked my opthamologist about HDX as I take 200mgtwice a day (plus weekly MTX 25mg injections), and he said the most important thing is to keep RA under control and to have annual eye checks. I had to have cataracts removed in both eyes last year but that was apparently the effect of all the steroids I was on the year before while they were trying to get the RA under control. There's no perfect solution!

[Caza in reply to joanne2]

If were you I’d write to the consultant & then follow it up with a phone call to his/her secretary. In the early days I was concerned that the painkillers that were prescribed was not right for me & the consultant phoned me. Your entitled to a hospital eye test once a year whilst taking Hydroxchloroquine.

[JFlay in reply to joanne2]

My consultant said the hospital eye dept will (eventually) call me for a yearly (?) eye check up, but I guess they are very much behind. In the meantime to carry on with yearly optician eye test.

[Hidden]

No I’ve been taking it 4 years now. Get my eyes checked regularly..... all good