Hi everybody. I've had to come off MTX because it damaged my lungs after two and a half months. The rheumatologist has now decided to put me on hydroxychloroquine (what's the abbreviation? I can't keep writing that all the time!) and I'm gonna do some internet research on the drug. However, as everybody is so good and helpful on this site I thought I'd try here first. Is anybody on it solely (ie not in combination with anything else?) and how effective has it been? Are there any serious side effects (I know about the retina damage). I'm actually feeling fine at the moment and haven't had an RA drug for nearly two months but the rheumy thought that was probably because the MTX was still doing its work. He said that he was helping me to find a 'friend' to fight the disease, which I thought was quite a good metaphor. Thanks in advance.

23 Replies

  • Hiya Glynis. HCQ was my first DMARD from diagnosis & once it got going it got me under control for just under a year. Once I started to flare & need steroids my Consultant decided to try double therapy with MTX but that didn't control me well enough so HCQ was withdrawn leaving just the MTX which controls me well, has done for nearly 6 years.

    I had sun & light sensitivity & headaches on HCQ & lived in sunglasses. You're aware of the possibility of problems with the eyes & why your Rheumy will ensure they're ok before starting you on HCQ & recommend an annual check whilst you remain on it. I had mine examined more regularly in hospital but that was because my Consultant was following different guidelines as I wasn't in the UK at the time. I used to wear contact lenses but no amount of comfort drops stopped my eyes feeling as though I had sand in them so eventually gave them up as a bad job.

    We all react differently to meds & whilst it did get my early RD under control obviously HCQ didn't suit me in the long term but I hope it's the DMARD for you & you have no issues with it.

  • Hi thanks for getting back to me. I haven't really had any positive feedback on the drug yet, yours is probably the least negative and even then it didn't work long for you. I was on sulphasalazine initially but that stopped working after about 18 months and hence MTX. We'll have to wait and see. I suppose its getting the drug right but it does seem like hit and miss doesn't it with these drugs? Cross our fingers and hope it doesn't do too much peripheral damage. Thanks again.

  • You know as well as anyone that the meds we need in an effort to control us aren't aspirin but I think it's a case of until you try you never know how you'll react, either positively or negatively Glynis. MTX has been the one for me for nearly 6 years but your body doesn't tolerate it & I had good results on how HCQ for nearly a year then it became less effective. That's not to say you'll not tolerate it well, it could be the one for you, let's hope so anyway. It does appear to be a bit hit & miss but much depends on how quickly treatments starts after the first signs, severity of the disease, whether you're seropositive or seronegative how well you respond to treatment, to name a few! I was one of the fortunate ones who only needed to try one other DMARD to get me controlled & save for the odd hiccup I've been fine especially since changing to injections as absorption is more efficient, less of the drug is lost. This is why sometimes a Rheumy will reduce the dose when changing us from tablets to injections.

  • I was on Plaquenil for a few months. I had some eye problems, and my RA is quite aggressive. I didn't feel any worse or better, except vasculotis in my eye. I was moved up to Arava. Having bad side effects with concentration and small flares. I'm now facing biologics. But unfortunately can't swing the $20,000 a yr price tag (I'm in Canada).

  • Hi thanks. It does all seem a bit 'lucky dip' to me. I'll have to see how I get on and hope at the very least it doesn't do further damage.

  • I was given HCQ after failing on oral mtx, leflunomide and sulfasazine. While it helped a little to keep the stiffness down in my fingers it didn't do much else for me. My inflammation levels kept rising and overall pain got much worse on it. I've recently started on injectable mtx along with the HCQ and my condition is finally improving. Hopefully once back under control I will ask to stop the HCQ as I'm not convinced it's doing any good.

  • Hi thanks - yours is the third barely positive comment about this drug. I'm starting it today and let's hope it turns out to be my 'little friend' - I'm scared stiff of MTX now after what it did to me - one of the few unfortunates to get a side-effect. Why do you have to have injections of MTX?

  • When on the oral mtx I suffered awful hairloss and fatigue. I felt very depressed and became a virtual recluse. I read that injectable mtx was absorbed differently and better tolerated, often meaning a smaller dose could be used. I asked to try it over a year ago but was told there was no point as it wasn't any different to the tablets. However after a year of trying several other Dmards and the next step being biologics it was decided that injectables might work after all? I find mtx works great for my pain and stiffness and so far I'm holding onto my hair but the familiar fatigue and depression is returning. I'm going to stick with it though as hopefully the side effects will diminish given time.

  • Thanks for your reply. I also had hairloss with MTX and my hair is starting to thicken again now I've stopped the drug - I don't have to de-clog my hairbrush as often as I was. If there's no difference between tablets and injections then why should there be both? Sounds like they were trying to fob you off - you really have to fight your corner sometimes don't you? I'm glad the injection is better for you - is the tiredness/depression something that anti-depressants could sort out? I was on anti-depressants at the beginning of my menopause and they really helped. Now I'm using an HRT patch and so don't need them - sorry I don't know your age; you may be way off the big "M".

  • I'm 46 Glynis but had a subtotal hysterectomy about two years ago so have no idea if I still ovulate or not. I really think the feelings are linked to mtx as it went away when not on it. I had bags of energy but unfortunately my RA ran out of control and was unbearable. I don't think I'd use hrt as my sister has breast cancer which I understand increases my risk of getting it too. Anti depressants are something Id try if things don't settle in a few months. Good luck with your HCQ and hope it works for you. x

  • I have also been prescribed Hydroxychloriquin after Sulfasalazine and MTX both gave me side effects and told to stop them. I have not been given an eye check at the hospital and am really scared to start HCQ because of the eye problems it can cause. when I said this to the Rheumy she just said it can take up to 5 years to affect your eyes and the eye dept are happy with you taking it. I told her I hadnt seen any eye specialist apart from a normal eye test over a year ago and she seemed to dismiss this and said there are no reports on your records about your eyes not being ok so suggested try it.

    My next appointment with Rheumy is April and I am dreading telling them that I havent taken it but Im sorry I feel my eyes are the only thing that dont hurt me and seem to be working ok at the mo so I am not going to risk them I have enough to put up with. Would the Rheumy take this drug without a proper eye check? I dont think so. Gentle hugs Joolz.x

  • It is rare to have this side effect when HCQ is used as recommended but it is nevertheless listed. I was diagnosed in Spain so my experience was slightly different but I had a test at the diagnostic clinic before I was given HCQ to ensure I was ok & at the hospital every 3 months whilst on it. Here in the UK an ophthalmological examination is recommended before starting treatment & annually whilst you're taking it. Maybe having a read of this link from the eMC (electric Medicines Compendium) may help you Flossyjoolz. medicines.org.uk/EMC/medici...

  • Thank you I will have a read.

  • I started HCQ200mg in November. I am also taking Medrol slowly tapering down to now to 1mg/day. Trying to get off Medrol been on since July 2013. I'm not sure if HCQ is working yet. From what I heard HCQ takes a few months to kick in. I was instructed to increase to 400mg of HCQ if needed while decreasing Medrol. Very exhausted lately & some swelling as well as stiffness. One good thing is that HCQ is definately helping my hives! Haven't had hives since I started HCQ in...Good luck! ! :-)

  • Thanks Donna. I'm gonna start tomorrow so fingers crossed. Is Medrol an NSAID?

  • Medrol is like our Medrone, methylpred (a steroid) Glynis.

  • Thanks. Have a good weekend.

  • No probs, you too.

  • No, Medrol is a steriod and not good to be on long term but helped my pain. I am allergic to Nsaids & Sulfursalazine meds. Hopefully Plaquenil is the correct meds. Good luck tomorrow!

  • OK - you need a positive story so here goes. I have been on hydroxy for several years. For me it was a wonder drug. I went from barely being able to get up and down stairs and, on my worse days, having to flop out of bed as I was so stiff and seriously thinking I would have to stop working to feeling relatively normal. I was on a cox2 inhibitor as well to control inflammation. I still have flares and I still have pain and stiffness but it's liveable with and I live alone and independently whilst working full time. I had to stop taking any form of anti inflammatory last year as my stomach can't cope any more so I have more pain and stiffness than previously but even on my worse days now it's like my better days before I started hydroxy. I was apprehensive about the potential eye problems too before I started but I've spoken to opticians about it and been assured that the incidences are very rare. I make sure I always have annual eye checks as recommended. Everybody reacts differently to meds and we're more likely to focus on the negative stories to safeguard ourselves. I would say give it a go as you might be one of the fortunate ones who respond really well. Do be aware though that, like many of the DMARDS, it takes time to notice any improvement. For me it took a good twelve weeks or so to kick in. Good luck x

  • Thank you mistymeana for your positive reply - it has really helped. I was unlucky with MTX as I was one of the rare few who got lung damage and had to come off it immediately. I really hope that HCQ does it and I feel much more encouraged now by your email. I take meloxicam (NSAID) and have been on it for many many years - so far no stomach problems. I was just about to wean myself off it when the MTX finally started to kick in, but then all the problems and back to square one. I'm going to start the drug tomorrow so fingers crossed. I've been off the MTX since just after Xmas and am still OK but if the HCQ takes as long as the MTX did (almost 3 months) to work I'd better start it immediately.

    Let's hope it is as effective for me as it is for you. Thanks again.

  • I take Hydroxy, and have done so for about 5 years now with no problems. I also take MTX and Sulpha, but at one point I was doing so well and thought that Hydroxy wasn't making much of a difference that I reduced it right down (with my rheumies agreement). I soon realised that it did have a very good effect as I started to flare. Needless to say I'm back on it!

    Anyway I was worried about my eyes so did a lot of reading of scientific research papers. And the overwhelming view I got is that eye problems are amazingly rare - to the extent that there are no recent cases of it happening at all. And particularly in people who are within the lifetime dose of 1kg of the drug. Which is equivalent of taking the normal 400mg a day for just under 7 years. So I decided not to worry about it until then anyway,although I do have annual eye checks.

  • Hi, I was put on Hydroxychloroquine because I have crystals in my joints(CPD) .I have now been told that I have Fibromyalgia which is quite painful,accompanied by stiffness as to whether or not the Hydroxy will help I do not know.

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