stopping hydroxychloroquinne

[lindyloo2018]

Hello

has anyone stopped hydroxychloroquinne ?

but kept going with methotrexate

did stopping hydroxychloroquinne result in a flare ? if so how long after stopping hydroxychloroquinne did the flare show ?

many thanks

[Boxerlady]

I tried stopping Hydroxychloroquin (at the consultant's request) in February this year but went into a flare almost immediately. I had previously tried a lower dose before the pandemic and had the same problem. Been on Methotrexate throughout and also on Sulphasalzine when I tried last time. I rang the nurse helpline and was told to restart it. I'll be interested to see what is suggested at my next appointment - supposedly next February.

[lindyloo2018 in reply to Boxerlady]

ok thanks, how long did it take back on the hydroxychloroquinne for things to stabilise ?

[Boxerlady in reply to lindyloo2018]

Hard to say. It wasn't a full-blown flare but my wrist (which was already iffy) became more painful after a few days so I did my usual thing of taking regular paracetamol and ibuprofen and it did settle. It's still not perfect but manageable so I'll see what is said next time.

As I understand it, Hydroxychloroquin isn't particularly strong in itself but is an "enabler" so I suspect that the Methotrexate and Sulphasalzine just about controlling things but the lack of Hydroxychloroquin means that they don't.

[lindyloo2018]

ohh,so you are still not taking the hydroxychloroquinne? I was told I could not take ibuprofen with methotrexate

[Hidden in reply to lindyloo2018]

Hello. What do you take for pain , I was just wondering.

[Boxerlady in reply to lindyloo2018]

I went back on the Hydroxychloroquin almost straight away.

Re the ibuprofen, my rheumy nurse told me to take it with paracetamol when I was struggling previously but that was me - it's important that everyone gets personalized advice from their team.

[KittyJ]

I had to stop hydroxy and I didn’t flare but I was taking a biologic and mtx at the time. Hydroxy is one of the milder drugs and it seems it wasn’t doing anything for me, which is sad because I’d been on it a long while, probably unnecessarily.

edit: I was on hydroxy a long time before this happened so I hope I haven’t worried you 😊

[rmros]

I was advised to reduce it to 200mg once, as my weight had dropped and I was below the threshhold. I wouldn't say I had a full blown flare but I had more symptoms and asked to go back up to 400mg. Consultant (a different one) agreed as I was only marginally below the weight limit.

Then another time I tried to stop completely and had a massive flare.

Can't say that would happen to you, but that's my story!

[Sheila_G]

I stopped hydroxychloroquin many years ago. I can't remember having a flare after stopping it.

[lupus_01]

i stopped hydroxy. No major flares .supposed to start methotrexate but managing ok with just arcoxia. But I did change life style (retired and moved to sunny climate)

[bpeal1]

The problem is we are all so different and our disease is so different, that one persons experience with a particular drug is very different to the next. Unfortunately treating RA is very much a game of trial and error. Good luck finding the best treatment regime for you.

[nanny_bee71]

I was on hydroxychloroquine for 4 years but had to stop because of tinnitus - carried on with methotrexate but still have regular flares. Starting on adalimumab next week

[Spin1959 in reply to nanny_bee71]

that’s really interesting because I’m on methotrexate and hydroxychloroquine and have started having tinnitus. Do you think it is linked?

[nanny_bee71 in reply to Spin1959]

Apparently tinnitus is one of the possible side effects of hydroxy - although I had tinnitus prior to starting it definitely became worse. Tinnitus now is a bit more bearable

[Spin1959 in reply to nanny_bee71]

thanks I had no idea

[JulesCurrie in reply to nanny_bee71]

I stopped my hydroxy because developed tinnitus too. Did make any difference to flares but still have tinnitus…

[janmary]

I stopped Hydroxy when I started to have terrible nightmares, tinnitus and feelings of anxiety ( I had never had these symptoms before) . The symptoms stopped and have not come back - apart from tinnitus .

I didn’t have a flare, but then it wasn’t really working anyway!

[Cazzie52]

I came off hydroxy and all my other tablets a few years back, apart from methotextrate, which I have reduced to 7.5mg by injection. I feel great and have had no flare up’s. I swear by Turmeric Golden Paste which I take 3 times a day.

[Happy5]

I was advised few years (5 approx) to stop taking hydroxychloroquin with a mumbled from the RA consultant ( not my usual a locum) it's not having an effect on your RA. So not really sure why I was stopped?

I didn't notice a flare or any changes with my RA so guess as stated it wasn't effecting my RA in a positive way.

Thing is as we're all so individual guess you're best being led by your RA team.

[joycen60]

I stopped taking Hydroxy a couple of years ago. I was taking it with sulphalasine. I was fine, though my RA seems to be under control as I haven't really had a flare since the initial one about 5 years ago.

[Sarmita50]

I h have MTX for many years now. I was given Hyroxi. along with it which I had gor 5 years but thry stopped it now. I have moderate flare ups and they increased the dose of Mtx tp 25mg

Since2014 l had a pacemaker they stopped Ibuprofen although l had it all along since I was diagnosed. It seemed to help more than paracetomols which l am only allowed to take.now.

[nomoreheels]

Hydroxychloroquine was my first DMARD & methotrexate was added after around a year. My Consultant thought the HCQ had stopped working, for obvious reasons, so MTX was added & HCQ stopped some weeks after. It was pretty obvious from my response to MTX that HCQ had indeed stopped working.

Maybe not an ideal comparison given I wasn’t on double therapy for any length of time but my experience was HCQ wasn't missed at all. We do all respond differently though so your body may react differently to any one of our reactions. I hope you don’t flare but if you do I can only suggest to contact your team to report it asap then they can recommend what's best for you to do.

[Cal66]

HiI have sle and fibro. I was put on Hydroxychloroquine for my sle. I went for Field tests and was told I possibly had Toxic retinitis, a an consultant rang me up to tell me to stop Hydroxychloroquine immediately and that I will need to have further tests to confirm his diagnosis and then my rheumatologist rang up to also tell me to stop. As a result I did have a flare, but that could have also been down to stress. Have you not had previous breaks from Hydroxychloroquine to know if this is a usual reaction or not? If your flare is really bad you could maybe ask for a depo injection to help you through it.