Hydroxychloroquine: lag time? (+ Triple Therapy) - NRAS

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Hydroxychloroquine: lag time? (+ Triple Therapy)

Smelliott profile image
38 Replies

Hi all

I've got seronegative inflammatory arthritis, was first diagnosed 8 years ago but have had it largely under control with methotrexate until around New Years Eve, when I suddenly started a massive flare-up which has been with me ever since. At points I've been crawling around the house on my hands and knees as my feet have been so swollen & painful. Been smashing the prednisolone for 4.5 months now too, which is a worry. Glad to have found this forum, as despite supportive family and friends it's nice to feel less like the only one in the world. Anyway, I was just wondering...

1. For those on Hydroxychloroquine, how long did it take for you to notice a benefit (if at all)? I started taking this in addition to Methotrexate about 11 weeks ago, and it's done roughly naff all so far. Desperately hoping it might start doing something, but given it apparently takes 12 weeks to build up in your system I'm getting less hopeful that it's going to do anything.

2. Has anyone had much success with triple therapy (methotrexate + hydroxychloroquine + sulfasalazine)? I'm due to start this very soon, as opposed to trying biologics (due to Covid, naturally). Must admit I'm quite excited at the prospect of orange urine & tears. Less excited at the prospect of potentially another 12 weeks of pain and misery to see no benefit, ha ha.

I've got loads more questions, but we'll leave it at that for the moment.

Thanks all, stay safe!

38 Replies
helixhelix profile image
helixhelix

Took me at least 12 weeks, and it sort if crept up on me. So would suddenly realise that one finger that had been hurting was ok, for example.

I was on triple therapy very successfully for about 8 years, and in remission for most of that time. At first I had biologics envy, and wished that the consultant would agree to move me on to them. But then, the more I read the more I realised that the outcomes from triple therapy can be just as good as biologics, and biologics carry some pretty serious risks. So I got over my envy and was happy to stay on the triple therapy, especially as I had no side effects that lasted (apart from orange pee, but no tears).

(About 18 months ago the T-therapy started to be less effective, so I am now on biologics - and feels pretty much the same. )

Smelliott profile image
Smelliott in reply to helixhelix

Ah, sounds like I shouldn't give up hope on Trump's favourite snack just yet then. Interestingly, a couple of days ago the gremlins started departing my feet to holiday in my knee. Who knows why? Thanks for answering, it's cheered me up a bit. Been a few dark moments over the last few months.

dawkin_S profile image
dawkin_S

Sorry you've been suffering so badly - this really sucks sometimes.

I had never even heard of triple therapy, but that looks very interesting, so many thanks for posting a query about it. If my current methotrexate dose-splitting doesn't help, that could be a good next stop for me. Just read helixhelix's response and had a quick read around and as it seems to be just as effective as biologics for some people, that sounds intriguing.

Anyhow sorry, back on topic - hydroxychloroquine took a long while to do anything for me - at least the 12 weeks, I'd say. I was on just hydroxy first, then methotrexate added later on, so the opposite way to you.

Smelliott profile image
Smelliott in reply to dawkin_S

Ah, so I've been helpful! First time for everything. Glad to be of accidental service! Also good to hear the hydroxychloroquine took 12+ weeks for you too. I thought it was a dud, but maybe not. Good luck!

dawkin_S profile image
dawkin_S in reply to Smelliott

Fingers crossed (gingerly, of course) that it kicks in soon for you. And yes, this is the one time when you should follow the Donald's example.

Smelliott profile image
Smelliott in reply to dawkin_S

*wipes mouth with sleeve after downing a shot glass of Domestos*

Sorry, what was that?

AgedCrone profile image
AgedCrone in reply to Smelliott

Keep your sense of humour Smelliott..it’s the one thing you really need when your are waiting to get settled on meds.

You’ll get there soon!

marigold54 profile image
marigold54 in reply to AgedCrone

Too right!

in reply to Smelliott

😂😂😂

Lolabridge profile image
Lolabridge in reply to Smelliott

😂

dawkin_S profile image
dawkin_S in reply to Smelliott

Brilliant! 😂😂😂

Are you on methotrexate tablets or injections?

Welcome we get it totally ask any questions someone will have an answer generally.

Smelliott profile image
Smelliott in reply to

Tablets. I didn't realise MTX injections were a thing!

in reply to Smelliott

Mtx injections are better as our digestive system can destroy some of the medication and we may not get the total benefits. Injections bypass the stomach and are absorbed much quicker often resulting in a lower dose. Something to talk to your consultant about. I have had both and the injections work better for me.

marigold54 profile image
marigold54 in reply to

I wasn't aware you could have injections either. I've had methotrexate tablets on 3 occasions over the years with different meds but i've always had to stop them after about 6 weeks due to infections. I was offered to have methotrexate again about 2 months ago and i totally refused. I think they should have realised by now that

methotrexate causes my chest infections which then mean i have to stop meds to take antibiotics, then end up waiting weeks for my medications to have an effect again. Then about 6 to 8 weeks here comes another infection, and so it goes on. It's a pity really because the methotrexate helps with the pain and swelling but it was affecting my lungs and STILL a stand in consultant wanted me to try it again.

Smelliott profile image
Smelliott in reply to marigold54

Oof, sorry to hear that. I've been lucky with methotrexate, no side effects, and up until 4 or 5 months ago it had always been enough to keep my symptoms at bay to a large extent. I hope you find something that works for you!

Smelliott profile image
Smelliott in reply to

Interesting! I'll certainly look into this. Used to be a real wuss when it came to needles, but regular blood tests have sorted me out in that department.

in reply to Smelliott

Nothing like a blood test .. these are dead easy and pain free.. bit like an epipen just push into thigh or stomach . Nothing to it

Lolabridge profile image
Lolabridge

Hi Smelliott and welcome. Sorry you’re suffering but I’m pleased others have responded with encouraging stories from their own experiences.

I’m delighted also you seem to have a wicked sense of humour to amuse us! 😄

Smelliott profile image
Smelliott in reply to Lolabridge

Yeah, really happy to have found this community - seem to be a lot of good people on here! It has been rubbish recently, but I keep telling myself that I got better before when I was first diagnosed, and at least my employers are being cool with me being off work/shielding.

VeronicaF profile image
VeronicaF

it took 12 weeks for Hydroxychloroquine to kick in with me and when it did, t changed my life, I didn't do very well with sulfasalazine, so had to come off that one, I still get flares now and then but I can still move and walk and I am not on all fours or struggling to get out and in the bath and things like that

it has changed my life Hydroxychloroquine but it took a full 12 weeks before it started to work

Smelliott profile image
Smelliott in reply to VeronicaF

Encouraging! Thanks! Yeah, made the mistake of having a bath a couple of nights ago. Got a bit stuck, ha ha!

Lolabridge profile image
Lolabridge in reply to Smelliott

Been there done that too!

At 11 weeks I wanted to give up 12-13 and suddenly everything seemed better. At 18 weeks should I dare to feel I am in remission. Hang in there. Fingers tightly crossed for you.

Smelliott profile image
Smelliott in reply to

Then I fully expect to be back turning somersaults in my leotard this time next week, hooray!

Knitmare profile image
Knitmare

I take methotrexate and hydroxychloroquine for rheumatoid arthritis and it's been fine for me. Took about 6 weeks to kick in. I do get occasional flare ups but otherwise I'm fine.

Smelliott profile image
Smelliott in reply to Knitmare

6 weeks! You don't mess about!

mjrminor profile image
mjrminor

I'm also sero-neg and Hydroxy took just over 12 weeks to kick in for me. I take it with sulfasalazine and yes, look forward to luminous pee! I also seem to have a semipermanent tan but just on my face. 😬 Yes, it can also 'dye' your skin.

Tried the whole triple therapy thing with added Leflunomide, but my blood pressure went through the roof. Fortunately for me they managed to get the RA sort of under control with just the two drugs.

Smelliott profile image
Smelliott in reply to mjrminor

Hydroxychloroquine and orange skin? That sounds strangely familiar somehow... Another 12+ week story is good for my morale, especially as my knee has suddenly decided to do its impression of a cantaloupe. Thanks!

mjrminor profile image
mjrminor in reply to Smelliott

😂 Oh god, now it all makes a twisted kind of sense!

Sheila_G profile image
Sheila_G

So sorry you are in such pain. You are having a very bad time. I haven't been on triple therapy but when I was first diagnosed I was given methotrexate and hydroxy. It is 16/18 years ago now. I took hydroxy for about 2 years then decided I didn't want to take it any more because of the damage it can do to your sight. I didn't notice any difference when I came off it. Sorry that this isn't more helpful. x

Smelliott profile image
Smelliott in reply to Sheila_G

Interesting that some people are given methotrexate alone at first (as I was), whilst some are given other DMARDs too. And hey, a friendly virtual ear is always helpful.

Brychni profile image
Brychni

Hi there Smelliott - I was diagnosed with the same about 8 weeks ago (beginning to lose count!) and was hesitant about taking hydroxyc. because of side effects but the rheumatology nurse gave it to me straight that if I didn't I would soon wish I had.

She was right because I am still waiting for it to do something and during this waiting my symptoms have got far worse than they ever were and I think they are a taste of things to come but hopefully by then the hydroxyc. will have started to take effect.

When I was prescribed it by the consultant she 'warned' me that it could take as long as 6 months to take effect and at the time I wasn't in constant but rather intermittent pain, so I didn't care and had a rather cavalier attitude to it.

You are further down than road than I am and hydroxc. is as I understand it, the first drug they try. I suppose that because you were in a kind of remission that they consider you to be at square one and are treating you as if you are newly diagnosed. If you go on RA WArrior website there is some info about 'remission' and how it's a bit if a myth. However, if hydroxyc. does keep it under control that will be great for you as it's one of the gentler ones with fewer side effects. It is of course far too early for there to be any effects for me and although I still have nasty pains popping up all over the place, I have over the past few days had a bit more energy and I wonder if this is the beginning of the medication starting to take effect.

Fingers crossed for you.

Smelliott profile image
Smelliott in reply to Brychni

I'd read on a US-based site that it could take as long as 6 months. I hope not though! Be interesting to see how we both get on. 12 weeks on hydroxychloroquine is this coming Tuesday for me...

Smelliott profile image
Smelliott

I started sulfasalizine today. I discussed with a rheumatology nurse whether it was worth giving the hydroxychloroquine another couple of weeks to work first, but both agreed the priority is getting me off the prednisolone ASAP.

If anyone's interested in triple therapy I can post updates? Don't want to bore anyone though!

Llanberisman profile image
Llanberisman

I’ve been on the three drugs for a year or so now. Switched to injecting mtx From tablets about six months ago. Overall, they seem to be working ok (but who knows what I’d feel like without them, eh?). Get the occasional flare up, but they seem to coincide with low air pressure systems, I’m noticing more and more. Don’t seem to have any particular side effects.

It’s worth the effort to get off the preds.

Good luck, and keep us posted, Smelliott .

Smelliott profile image
Smelliott in reply to Llanberisman

Thanks! My thoughts exactly. Tbh I'm pretty anxious about having been on a reasonable dose of prednisolone for 5 months now. My wife delicately pointed out the other day that my usually shapely calves have almost wasted away, ha ha. God knows what it's doing to my insides.

JFlay profile image
JFlay

I've been on HCQ since last August and was feeling a lot better by the end of the year, so it took 3-4 months. I still get stiff and achey feet/toes/ankles and some fatigue but all my bloods are 'normal' 🙄

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