Hydroxichloroquine

[Sjhoney]

Hi! I’ve just started hydroxichloroquine and wondered if anyone has experience of being on this drug, side effects etc? I feel slightly anxious as I had very bad reactions to methotrexate and sulphasalazine. Thanks 👍

[popsmith1874]

I was on it when I was on methetrexate and sulfazalasine and i didn't have any side effects but it was dropped along with the sulfazalasine when I started the Benepali xxx

[nomoreheels]

Hiya Sjhoney. Hydroxychloroquine was my first DMARD & it worked well initially, less so about a year in when methotrexate was started. Like most I started on the highest dose, 200mg twice daily (am & pm) but before I did I had an eye test, used as a baseline in case there are any changes. I did have some side effects, light sensitivity & bad headaches but I took to wearing sunglasses when out as I was just grateful it worked & continued on it though my Consultant arranged that I had 6 monthly eye tests at the hospital.

You probably know that a very rare side effect is retinopathy, this is why we've to have a baseline eye test. This can be done at any opticians but do tell the optometrist that you're about to start HCQ & thereafter at annual tests (unless otherwise recommended) that you're taking it. It is a very rare symptom though, just so you're aware.

Because you've had reactions to SSZ & MTX doesn't necessarily mean you will with HCQ so let's hope it's a good med for you. I had a rare reaction to SSZ but I'm fine on MTX injections, have been on them for 7 years now.

[Sjhoney in reply to nomoreheels]

Hi! Yes I have been advised to get my eyes tested, which is long overdue anyway! Thanks for your reply, v helpful 😊

[nomoreheels in reply to Sjhoney]

You're welcome.

[Sjhoney in reply to nomoreheels]

Hi, yes I know it’s not necessarily the case but I can’t help but feel a little anxious. Thanks for your response tho, v helpful 😊

[nomoreheels in reply to Sjhoney]

It's understandable but they can't force you to stay on it if you do. Just don't start them thinking negatively, turn that round, it often helps get your mindset in the right place. Fingers crossed for you.

[Sjhoney in reply to nomoreheels]

Thanks! Yes you’re right of course and I did go into sulfasalazine positively but it didn’t work. I’m thinking I might put off taking them til after Xmas etc, I love all the eating and drinking and don’t want to feel queasy 😊

[nomoreheels in reply to Sjhoney]

If you think that would be ok, the only thing that would bother me is a flare over Christmas if you're without anything, that would be a bigger problem if I was in your situation, not being able to get to see your GP or Rheumy nurse for help. My experience is, & it is only mine, if I don't have my MTX I'm really bad quickly but of course it depends on if you flare without DMARDs too. My take on it is you've started them now, you're on day 2, see if you're ok & if not & you do happen to have intolerable side effects you can stop them & the side effects would ease within a day or two, you can't just stop a flare in the same manner.

[Sjhoney in reply to nomoreheels]

I’m also on 5mg prednisolone and naproxen so that keeps things steady. 😊

[nomoreheels in reply to Sjhoney]

Me too though I'm down to 2mg pred but was on 3mg deflazacort & etoricoxib not naproxen but still an NSAID yet if I stop my MTX they don't hold a flare off. But you've already started your HCQ haven't you? If you've no sign of side effects there's no need to stop is is there?

[wishbone]

I can't take any RD meds at all except for Hydroxychloroquine which has been a godsend for me. I tried sulphasalazine when first diagnosed but had to stop taking it because of a skin rash. I did have headaches around the time I first started taking it, which may or may not have been hydroxy related, but they stopped after a while anyway. Other than that - no noticeable side effects. As nomoreheels says, do make sure to have your eyes tested on a regular basis. Hydroxy doesn't work as good as other meds I used to take such as methotrexate but is definitely helping me, along with regular pain relief, and I would not be in a good place without it.

Hope it works for you.

Peace people V

[Hidden]

I developed a rash on my trunk. Was advised to stop and try again but rash came on with more ferocity so had to stop this drug. I also had hideous reaction to sulphasalazine so am afraid I won't touch methotrexate. I hope you are able to tolerate it and that it helps. I think it was also responsible for a few bouts of herpes at the base of my spine ( sorry not nice but most people carry it ) which my body had been able to suppress before and can thankfully suppress again now. I also experienced a 'wooshing' sound in my head at night - God knows what that was !

[Sjhoney in reply to Hidden]

Oh the joys 😳. I had terrible psychological side effects with methotrexate and sulphasalazine so I’m hoping this works. I hate this whole thing, arthritis is not something I thought I would have to deal with 😕

[Hidden in reply to Sjhoney]

I hope it works for you too. Fingers crossed. I think hydroxy is meant to have the fewest side effects. So there is a good chance. : )

[Cynthialcj]

I was nauseous 24/ and with injection also..so went to biologics