Hydroxychloroquine success :)

I've not posted for a while but thought I'd share my experience with hydroxychloroquine. I've been on it a few months and the difference is amazing. I sleep through the night, I don't dread the shift from sitting to standing, and can descend stairs in a relatively normal way. A colleague (not knowing about the meds) said I walk differently and I realised I've lost the stiff shuffly gait I had. There's some stiffness and I've had a couple of little flares but this is all very minor.

My immune system is struggling though. I got a cold that really quickly turned into sinus and chest infection, and caught tonsillitis. My wbc/neutrophils are as low/lower than they were during chemotherapy. I'm anemic.

For now it's worth it.

Obviously I have mild/early stage RA but I really hope that the meds stop it developing. Does that ever happen? The meds work and that's the end of RA?

13 Replies

  • I wish it was. My experience has been working through different meds with varying degrees of success. I've learned to take each day as it comes and to try to take advantage of the things I can do.

    That's over 20 years nearly.

    The thing to remember though is that we're all different and some peoples disease doesn't get worse!

  • Hi there I think the hydrxocoloquine has made a massive difference to me although last week I've been in bed with the sickness bug which has floored me and I also had a touch off jaundice but I am no getting my strength back

  • Oh that's such a shame popsmith - I thought you had just started back at work again. Hope you feel better soon.

  • How much are you taking each day? I'm on 200mcg at the moment. I started on steroids which were amazing then about five weeks int that I discovered I could take my hcq at the same time so my steroids are almost tapered out now, one more week on one tablet then two on a half a day then that's it.

    I've only had a few weeks on hydroxy and I don't think it has kicked in yet because I'm getting the sore thumbs, thick stiff fingers, and some of the aches and pains I had before my short spell as Wonder Woman came back :( I'm hopeful though especially after reading your post - so although I don't have any advice that will help you - your post had certainly helped me, thank you.

  • I was on just hydroxychloroquine for some years with almost complete control. So much so that after a five year period with no flares I came off it as the rheumatologist thought I no longer needed it. Only for the whole RD thing to flare up horribly a few years later.

  • Hi Pollymolly

    It's hard to know whether the flare has subsided or the Meds are working in my opinion.

    From what I read on here these things seem to follow a rather tried and tested path allowing for the individual variations of symptoms and treatment that suits.

    People take steroids and experience that almost miraculous illusion of recovery but an illusion it is sadly.

    In my case my GP looked at my blood tests four months after diagnosis and after being on 200mg Hydroxychloroquine twice daily.

    Saw the low ESR and said I doubt you will need Biologic therapy, I think your arthritis has burnt itself out.

    She hadn't taken into consideration my high CRP result and the fact I had been put back on 15mg of Prednisalone after Mthx, Sulfa and Leflunomide had all failed.

    So a week later at the hospital though I feel miles better my DAS28 scores fit the criteria to qualify for Biologic treatment.

    As oldtimer says above to come off any Meds is a huge risk. It's like once RA is out of the stable the horse has well and truly bolted.

    It's walking the tightrope of establishing exactly the right medication that works for you as an individual.

    Are your Rheumatologists not combining your Hydroxychloroquine with another DMARD out of interest?

  • I hope you feel better soon popsmith. Fingers crossed for you fruitandnuts - it took a number of weeks until I realized how good things were. They're not putting me on anything else as my white blood count was low before I even started the meds. I'm also sero-negative so blood tests are not very good indicators of any improvement. I'd be astonished if this was just a respite from a flare as I seemed to have a kind of baseline level of pain and stiffness that was always there but was sometimes much worse. I was never like I am now. I guess only time will tell. Another month before I see the rheumatologist again.

  • Well I sincerely hope you continue to feel so much better Pollymolly and at least it's only a month to wait before you can discuss it with your specialist.

    Remission does happen. Wishing you the very best of luck for the future.

  • Either I just spoke too soon or being without the meds for a few days last week has had a delayed effect. I've been having debilitating fatigue over the last few days ... unable to stay awake. I have been doing more physical activity bit not enough to explain this fatigue. And then yesterday/ last night all the RA symptoms hit, waking up yelling out in pain, sore soggy joints and I just feel awful. On the side one knuckle joint I have an inordinately painful rash type thing. It's similar to a rash I usually get on another knuckle during a flare. No one has ever seemed interest in these little skin things ... but it's strange they come up with a flare. Right, I'm going to try sleep now ...

  • I've had to have a day off work which is going to be awful to rearrange things for. This is a pretty bad flare, but maybe it seems so as I've been so well over the past few weeks that I didn't even think about RA - as if I was totally healed. But now I'm remembering it all - the difficulty getting up and down stairs, using taps, holding mugs of coffee. Before the meds I had better and worse days but never symptom free days. So what will a flare be like on the meds? How long will it last? Why has this happened now? Does it mean the meds have stopped working? Is there a delayed effect from missing a few doses?

    I also have a very puffy eyelid so assume that's my weak immune system leading to another infection.

  • I take this for Lupus and it seems to make a difference. I still flare up if I catch a cold or infection, go out in the sun or if it is that time of the month. I hope you feel better soon.

  • they want me to try this.. but the eye sight issue of 1 in 2,00o people having sight issues bothers me??

  • Seems high, I wonder if it's across all ages/extensive treatment, that would sway the figures. I know there's a risk of retinal toxicity but it is low. There are guidelines Rheumy's have to follow... weight for dose, it's recommended to have baseline due tests before starting on it & annual eye tests whilst taking it & such but it's a well used med for RD.

    This link takes you to the NICE guideline for hydroxychloroquine evidence.nhs.uk/formulary/b...

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