trying to taper Hydroxy but I think it’s failing.

[Pognose123]

in my second attempt to come off hydroxy. It’s failing as my pain and sore joints have come back. Am on MTX . I declined stoping dead and tapered with a month of taking my tablet every other day. It failed last time and they just put me back in it. Trying to come off it fir the sake of my eyes.

Has anyone else had this issue and were you put on something else ?

I’m so fed up - and feeling quite anxious. Going to ring nurse on Tuesday and at at least get prescription reinstated (she cancelled it straight away although it was an experiment for a month 😓) . Should I ask to speak to a consultant about my options? Hate this feeling of not feeling 100% confidence in the nurse. 😓

Thanks for anyone else’s experience.

[Madmusiclover]

Not this issue but yes speak to your consultant. If it helps I have a nurse I won’t deal with. We just don’t get on!

[Pognose123 in reply to Madmusiclover]

I found the nurse very dismissive of me choosing to taper as opposed to stopping dead. She also did not like the fact I had said it was my optician who asked me to ask them if I could come off the hydroxy. Very defensive. I wouldn’t mind but until my optician said about increased risk to eyes if on hydroxy more than five years I had no idea. 🙄

Yes - I’ll ask for a consultant appointment when I call on Tuesday - see how that goes down 😬🥴😵‍💫

[welsh12 in reply to Pognose123]

My optician would write to gp or rheumatology if any issueswithhydroxychloroquine. I had audiology recently and mentioned tinnitus and they asked me if GP knew I said had mentioned it but it had not been acknowledged by gp assistant. They wrote to my Gp and it was read back to me word for word by my Gp made me laugh.

[Madmusiclover in reply to Pognose123]

Good luck. You could ask for a different nurse.

[Pognose123 in reply to Madmusiclover]

We get whoever is on that day sadly, I don’t have just one. But a few of them have the same attitude 😓

[bpeal1 in reply to Pognose123]

Rather than contacting the nurse helpline contact the rheumatologist’s secretary, explain the problem and ask if it’s possible to see the consultant.

[Pognose123 in reply to bpeal1]

That does make sense, but I have to report to the nurses - that’s how our system operates. I don’t even have contact details I don’t think for secretary. The pressing task is to get prescription reinstated - and that’s via the nurse. 🥴😬

[Madmusiclover in reply to Pognose123]

You could do both. Xx

[bpeal1 in reply to Pognose123]

The secretary’s number might be on copies of letters to your GP which you should have received. If not phone the main hospital switchboard and ask to be put through to the secretary of Dr xxxx. I’ve always found the secretaries to be very helpful. The consultant will be able to reinstate the prescription as quick if not quicker than the nurse.

[KittyJ in reply to Pognose123]

Hydroxy retinopathy is rare and regular checks will pick up any changes and you can stop quickly. As it’s working for you and your eyes are ok I can see why they don’t think you need to change but you need to talk it through with your consultant. ( By the way, I was on it 25 years before I had changes in vision but I can understand your optician has scared you 😔)

[Pognose123 in reply to KittyJ]

Thank you for that information - I found that very useful and actually reassuring.

[KittyJ]

I agree, speak to your consultant as it looks like hydroxy was working for you and you will probably need something to replace it. Fingers crossed it’s not too long before you get another med. I stopped hydroxy dead when it caused retinopathy but I was already taking something else so I had no ill effects from stopping.

[Pognose123 in reply to KittyJ]

Thanks - what were you put on in its place? Thanks. 🙏

[KittyJ in reply to Pognose123]

I was on mtx and pred until I got a biologic when the mtx stopped working 😊

[Pognose123 in reply to KittyJ]

Thank you. ☺️

[Lolabridge]

Yes do contact your consultant not the nurse. It sounds as though you may need a different drug to add to the MTX so discuss options with him.

[Lizard28]

I’ve been on hydroxy for about 10 years now, my eyes get checked at the hospital yearly. I was told it is rare for hydroxy to cause problems but at least I do get them checked. I had to stop taking hydroxy once due to going through chemo, no need to taper. It takes a while to get out our body as is the same when you start it. I would definitely see your consultant before stopping it, mine would not be pleased if I took it upon myself to decide that without discussing it further, I’m sure there are other drugs you could change with. Hydroxy is one of the milder drugs. It’s a pity your nurse is not more helpful and discuss this issue for you with your consultant if you can’t get an appointment. I hope you get this sorted out quickly.

[Pognose123 in reply to Lizard28]

Another reassuring post - thanks. 🙏 no - I’m not stopping the hydroxy - I’ve already gone back to my dose. Just will soon run out of the supply I have 😖

[Rainyda in reply to Pognose123]

I've been on Hydroxy for 30 yrs....no problems. Eyes are checked more than usual because of the hydroxy. Was off once to try a different treatment, which didn't work. Find it works better for me; and I was told if it effected my vision in any way it would be stopped, also eye problems are reversible.(?) So far so good! Wishing you the best with your problems.

[KittyJ in reply to Rainyda]

Hydroxy retinopathy is not reversible that’s why hydroxy is stopped immediately there are problems

[Rainyda in reply to KittyJ]

Thx for info....I got this my back in 1994 when I was diagnosed with RA. I'm still checked every 3 mos. Again thanks!

[Fruitandnutcase]

I’ve been taking 200mg hydroxy since 2014 - my husband was my optician until he retired.

I have an OTC scan every year to see what’s happening inside my eyes and I have a thing called an Amsler chart at home - free to download - that I use every now and again to check.

It is very important though that you stop right away if hydroxy is affecting your eyes - the drug can cause irreversible blindness.

You really need to know what changes your optician was worried about that he thought you should stop - had worked out your body weight to dose ratio and thought you were taking too much for your weight or did he see changes that were not good, I don’t think the length of time you take it for matters so much as how much you take in relation to your weight and what changes show up on your OTC scan.

Even if it is rare if I was told it was damaging my eyes I would definitely stop taking it right away, pain or no pain. You only get one pair of eyes, there are lots of other meds out there you can try.

[Pognose123 in reply to Fruitandnutcase]

There were no eye issues currently. The optician alerted me to increased risk taking it for more than 5 years. The ra nurse said they try to get patients off it, after 5 years, but this was all brand new news to me. There was no mention of other drugs that could be used in place of it. All stuff I need to find out to make a balanced and informed decision.

Another person giving me reassurance about long duration hydroxy use. Thanks 🙏

[Madmusiclover in reply to Pognose123]

How blooming frustrating. Keep going.

[Fruitandnutcase in reply to Pognose123]

Some years ago one of the many consultants I saw - only ever seen the same one twice in ten years - anyway he seemed to want to stop my hydroxy because he felt I was in remission. No mention of taking anything else either.

He didn’t stop it but when I was talking to the pharmacy assistant at my local surgery, she said that the same guy had tried to stop her taking hydroxy too. She didn’t stop either.

Then two years ago when I was seen having heard something similar about stopping it after a certain period of time I asked the consultant I saw if I should stop hydroxy and she looked at me horrified and said oh no. So as they say - who knows ?

I certainly wouldn’t stop it if my eyes were ok. Good luck with it all 😉

[Wigelia in reply to Fruitandnutcase]

I have been on Hydroxy for about 7 years and was recently referred by my rheumy for an appointment with hospital Ophthalmology service. Result was no retinal toxicity and I will be sent another apt. in a year. Apparently this should be done annually but I was seeing the optician annually in the meantime.

[Fruitandnutcase in reply to Wigelia]

It should be if you take hydroxy. I’m always amazed at the people who don’t seem to be told that. It is really important.

Ideally you should have an OCT scan as well as an eye examination aao.org/eye-health/treatmen...

I pay for mine myself because our local hospital eye department is so busy with its own patients that it can’t cope with patients from other departments. I get a copy of my scan and keep it- I used to take it with me and have it scanned onto my records but that was in the good old days pre covid when I used to see the rheumy once a year

Ideally rheumatology ought to have a machine of their own and a couple of people trained to use it. There is no need to buy one as that sort of equipment can easily be rented.

[Boxerlady]

I've been on Hydroxychloroquin since 2019 and have arranged my own annual eye checks. A registrar has tried decreasing the dose twice but both times I've flared, rung the helpline and the consultant has increased the dose again. I'm also on Methotrexate and Sulphasalzine and we agreed at my last appointment to decrease the Methotrexate a little which has been fine but the consultant didn't mention the Hydroxychloroquin. I'm happy that the regular eye checks are sufficient and would always take a consultant's advice over an optician, registrar or nurse.