How did you get along with Hydroxychloroquine?

It was a mutual decision with my Rheumy to try me on Hydroxychloroquine alone for the first 6 months of my treatment as my wife and I are still trying for a family. I understood it may make me feel unwell for a while but I should stick with it & it would shortly pass. However 6 weeks along in my treatment & I have a constant sicky feeling in my stomach, a nagging headache which I can't seem to shake & as politely as I can put it . . . daily bouts of the old Aztec-2-Step as they call it it in Mexico!

Just wondering if this is common & these side effects will subside further down the line?

26 Replies

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  • hi charliebloking1, along with my RA I also have idiopathic Pulmonary Fibrosis and the last thing I need is the same symptoms you are experiencing with the hydroxy back to the rheumy doc I need more reassurance on this in fact the chest doc will have the final word on this. I don't know were you stay but it sounds my sort of place my sister used to stay outside inverness away up in the hills, thx mattcass

  • Hi matt,

    Sounds like you've got a really raw deal. I'm guessing that will certainly limit the treatment that they're able to give you given the Pulmonary Fibrosis but it seems Hydroxy is normally the best of a bad bunch, given it is relatively mild. Everyone seems to react differently to each drug so I wouldn't take what i'm experiencing as gospel.

    I was just wondering if others had side effects for so long. My rheumy seemed to suggest 1-2 weeks. If they do go away in time & the hydroxy works (It may take between 12-15 weeks to show any beneficial effects if at all) then i'm more than happy to put up with it for a while longer.

    I live in the MIdlands but yes I've stayed up by Inverness on many a holiday too. It's a gorgeous part of the world. You're sister sounds like my kind of person :-)

    Good luck with whatever course of treatment they decide will be best for you. They're the experts after all but one thing I learned quickly, like you, is it go armed with a raft full of questions you need answering.

    Charlie.

  • hi charliebloke1 the reason I am being more cautious than normal is I am waiting to go on the transplant list a.s.a.p. I hope, I am setting myself a target to climb Ben Nevis or any the Munroe's and do a marathon for the RA & BLF foundations next summer.mattcass

  • I've just read your previous post regarding the transplant & can only wish you well with that!

    Great idea to set yourself a goal to strive for. Funnily enough it was while climbing Ben Nevis that I first noticed something may not quite be right with me & my knees were in excruciating pain on the way back down. I wish you luck & keep in touch with how you're getting along. I'd love to get back up there (this time without the pain.) So if you do i'd certainly be up for doing the long slog up there with you.

    ps. you're on your own in the marathon though ;-)

  • Charlie, it's not hard to eat a Marathon Hee-Hee, Lets keep in touch

  • Hi Mattcass, please don't panic. Just because charliebloke1 is possibly having an adverse reaction to hydroxy doesn't mean you will. Most people tolerate it well. I'm a long-term IBS sufferer and was changed to hydroxy because my previous meds were making me ill. Noticed no increase in any IBS symptom or headache at all from day one so you will hopefully find you get all the plusses without the minuses while you wait for you transplant x

  • I have been on Hydroxy since Feb this year i also had my 1st steroid injection too and i have not noticed a change, if any thing my foot has worse pain and swelling is worse. Everyone acts differently on it. I wish you all the luck with trying for a family hun x

  • Cheers Sammie,

    I had my first steroid injection when I started the hydroxy too. The steroids really helped and I was back to my old self again for a while, no pains, no swellings & more energy (apart from the hydroxy side effects). The steroids have started to wear off & it's back to reality with a bump as my hands have been a complete mess again. So i'm off to my GP in a minute to get another booster (rheumy nurses instructions.) I'll have a chat with my GP about the side effects but don't hold out much hope. She seems pretty clueless regarding anything Rheumatology.

    In the meantime I'm still waiting to see if the hydroxy makes any difference in another 6 weeks. Where are you at now then? Are you changing to different meds?

  • My limited experience of DMARDs tells me that they take a while to get used to. It took me about 7 weeks to adjust to Sulfasalazine - I really thought I could not stand it but side effects disappeared all of a sudden. I didn't have any problems with Methotrexate but it did take absolutely ages & maximum strength for it to actually do any good ..... and then the improvement was surprisingly sudden too.

    However, do phone your Rheumy helpline or see your GP. I used to feel like a naughty child contacting the Rheumy department in between appointments but they couldn't be more helpful. You have been a very patient patient - 6 weeks of Aztec dancing etc. is a long time!

    Luce x

  • have the nasties gone? If so Yipeee! Px

  • Yes! Thanks Polly! Definitely had a bug rather than Sulfa reaction - it just went all of a sudden & even my weird Sulfa cold teeth and gum thing isn't so bad. I think keeping off Sulfa & NSAIDs too did help a bit though. If I wasn't so knackeroonied I'd be dancing for joy. x

  • Thanks for that Luce!

    I've just come back from seeing my utterly useless GP. She seemed completely bewildered. I guess we can't expect our GP's to know everything but a little bit of advice was all I required. It's not exactly an uncommon illness or drug for that matter. She wouldn't even give me anymore Steroids until she'd spoken in person to my Rheumatologist. Even though my Rheumy had included clear instructions on how she wanted to manage me through these 6 months on my notes which I could clearly read on the screen in front of her!!

    I'll get back onto the Rheum hotline . . . . & join you in the naughty class ;-)

  • Hi Charliebloke... Odd that Hydroxy is having such big effect, as it is the one that seems to be best tolerated, although v slow to take effect. Are you sure that you don't have anything else wrong, as sometimes easy to blame everything on RA and the meds when it's actually something different? But it's always best to tell your rheumy team, don't think you're being a nuisance as that's what they're there for! I took to Hydroxy like duck to water, but it seems that I'm quite resistant where drugs are concerned. Polly

  • Thanks Polly,

    I did wonder if it's something else as there are bugs galore circling round at work but i'm sure it's the hydoxy. I've tried changing the times I take it & with food, before food, after food etc but it always seems to hit me within a couple hours. On my days of not having to take it things seem to get better by the end of the 2nd day. Then it all starts again next time I take any.

    I will heed your advice and contact the rheumy team as I got no answers from my GP.

  • My GP did say that Hydroxy isn't always well tolerated so maybe you are one of the minority to whom this applies. Don't fret Mattcass - just google the Lupus sites and you will see loads of people take it (trade name Plaquenil)as a first line drug for SLE and it works for many of them without side effects. X

  • Hi Charliebloke. I second what Polly is saying about blaming meds when it could be something else coinciding with your starting Hydroxy. I took it for a year but am off it now because of other complications that are to do with my gastric system or gallbladder I think. I did often feel a bit queasy after taking my tablets but it was nothing too unpleasant and I was also struggling with MTX queasiness so I felt it was the combination that might have been the problem rather than Hydroxy on it's own - which I have never tried. Now i've been off it for about 8 weeks and I am noticing that the MTX has kicked back in but the stiffness is getting worse and I have a lot of aches in my hands and feet that weren't an issue when I was taking both. I'm starting to think that Hydroxy was more important that I realised in keeping the MTX working and the stiffness at bay. Hang in there and it will probably settle down but suggest you tell your rheumy and GP about this problem anyway. Tilda xx

  • Hi Tilda,

    As I've said to Polly I can't be sure its my RA but it all coincides with when I take the Hydroxy. My unhelpful GP just phoned to say she has spoken to my Rheumy so maybe I was a bit harsh on her. The message from my Rheumy is to stick with it until I next see her in June if I can.

    Interesting to read how you & others get along with MTX as I know that's what i'll be moved onto after my 6 months grace is over. It gives me a good insight of what to possibly expect. From what little I understand Hydroxy is usually insufficient in treating most RA patients but acts as a gateway to improving the efficiency of MTX when used in conjunction. So it probably was helping you hugely prior to stopping. Here's hoping your stiffness & pain are just a blip or you manage to find something else that works.

    Thank you for the reassuring reply & In the meantime it looks like I'd best shop around for deals on loo roll for the next 6 weeks.

  • Till June??? What are these people on? Obviously not drugs that may be disagreeing with them. Maybe keep a stiff upper lip for a week - & perhaps tinker with your diet? Are there any of the usual suspects that might be making nausea worse e.g. a lot of dairy or red meat? - & if things are still the same contact Rheumy nurse.

  • June did seem a long way away when she broke it to me & i'm sure I felt my face drop when she said so. I've decided to break it into weeks as everything seems to come sooner that way. That's unless it's my birthday. I've been stuck on 30 for 11 years now with that :-)

    I'm pretty sure my diet isn't helping so maybe I could do with a kick up the backside in that department. I don't eat much red meat these days, but bread is a major weakness of mine & i'm sure it's not helping when I stop & think about it. I'm also drinking way more coffee than could be good for me. My mum phoned her friend today who has RA & she apparently swears by incorporating lots of ginger in her diet to help settle her stomach down from her meds. So I'll also give that a go for a while. I used to like the ginger herbal tea so i'll try swapping the coffee for that as a start.

    Thanks for the tip. X

  • Oh dear re deals on loo roll! I'm currently in the opposite place but I have sons and OH who make up for it with the loo roll! I think it may pass if its Hydroxy but are you taking any stomach protectors yet? If not I suggest you ask your GP about taking some pronto. I was only prescribed them when coming off Prednisolone - after about 2 months of taking ibuprofen to max prescribed 24/7. Looking back I don't know why my GP prescribed anti inflammatories without giving me Omaprazole but think it may have contributed to my current predicament re GI problems. Am now taking it full strength (40mg per day) and it seems to be helping quite a bit with the pain and bloating so well worth asking. MTX made a huge difference to pain but only really took my inflammation markers down when I switched to injectable. Its a balancing act this RA business and there's no clear cut answers as all of us tolerate things differently. You would do well to research Leflunomide and Sulfasalazine too as MTX isn't the only option if Hydroxy alone isn't enough for you. Tilda x

  • Thanks again Tilda,

    The subject of any form of stomach protection hasn't ever been mentioned to me yet nor is it anything I've considered. It's something I'll certainly be bringing up (pardon the pun) when my next Rheumy appointment eventually comes around.

    For the time being I'm going to have a look at altering my diet, as per Luce's advice, over the next few weeks & see if I can help myself a bit more before I possibly add to my growing list of daily meds. I've now finally been given Prednisolone tablets today after having to make 2 trips to my GP today so the med cabinet is rapidly starting to fill up. Looks like I'll need to invest in a larger cabinet before too long.

  • Hi Charlie, When you contact the rheumy or GP ask them to try you on Omeprazole they are brilliant for stomach probs like any other drug they can take couple of weeks to settle in they normally start you off at 40mgs but when they start to work you can drop to 20mgs as I have done for the last 2 years, I also have been on prednisolone for years now even more so now I am was on 60mgs last week my target is 30mgs in 2 weeks time,how many mgs are you on good thing is when they kick in and settle down and some of your symptoms ease of you can drop them slightly at 5 mgs a time no more than that, please discuss both more in detail with your rheumy or GP, good luck. mattcass

  • Cheers matt,

    That's 2 strong shouts now for Omeprazole. 3 if I include my mum who's on it for her own problems. I will definitely ask about it if I can't shake these side effects.

    As for the Prednisolone. I'm not sure if that's what was in my first injection as it was just stated as "steroids" & that's all I wanted to know at the time. I remembered the nurse said she was giving me the "full whack of 120mg" as due to my age & size I could take it. Now that's worn off pretty quickly I've finally been started on the tablet form (after much faffing about by my GP yesterday.) Looks like i'm on a pretty low dose then. Just the 20mg, gradually stepping down to 7.5mg until I see her again. Just hope it's sufficient to keep my hands & wrists in check enough to get through my shifts at work.

  • Ive been on hydrxy since Xmas with no problems at all, thankfully.

    Started on mtx but couldnt tollerate, then lefluomide which has no positive affects at all!

    Ended up on the weakest dmard yet the best for me!

    Take care, hopefully you will get there.

    Xxx

  • That's helped restored my faith a lot Josie,

    Great to hear something positive about Hydroxy. I definitely don't want to have to stop taking it before it's had a chance to work so i'll persevere for a while longer !!. I don't think of my RA as being too bad compared to others so i'm really hoping just the Hydroxy alone will do it's job...

    Thanks for the support to you & everyone on here!!!!

  • Hi CharlieblokeI have been on Hydroxy for awhile now I had Headaches for along time many days I did not go out, was told nothing to do with med been told I have A.M.D. eye problem. AS for Sulfa After attending dentist/dental hospital for one year mouth ulcers sore tongue. 5 teeth out autopys twice on tongue, one week off Sulfa mouth cleared up. Tingling

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