In praise of Hydroxychloroquine

Its coming up for a year since I was formally diagnosed with sero-negative RA by a consultant rheumatologist. Ive now been in remission for the last six months and its clear I have a lot to be thankful for. I was started off on 15mg daily Prednisolone followed a few weeks later by HXQ, then tapered off the Pred which was replaced by meloxicam. After a month I stopped the meloxicam and since then just take 400mg HXQ daily. So far so good. Pain has gone completely, no swelling. Stiff hands for 10 mins every morning and tingly feet from time-to-time. I'll take that.

At my last checkup I asked the rheumy was he absolutely sure that I had RA. He said definitively yes, but that I had responded very well to the HXQ and I should stay on it for at least two years before even thinking of tapering off or discontinuing. A couple of weeks back I had a full eye examination at my local NHS hospital with visual field tests and retinal photography. All clear. So, for me at least, Hydroxychloroquine has been a wonder drug even though it took a couple of months to take effect. I should add that I had to get through a week of acute itching when I was sorely tempted to give it up.

I hesitated before posting this but then thought back to my low point when I was first diagnosed. There were very few positive postings which really got me down. Now I feel guilty about being in remission but that's outweighed by my wanting to share a good news story particularly for those who are in the early stages of this disease. I'm also acutely aware that the RA is still there, I can feel its shadow every day even though it does not (currently) have the strength to hurt me. One day it may come back, chances are it will. But until then I will live every day to the full.

8 Replies

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  • Never feel guilty about being in remission, naturally or clinically tonyaffe, I'm only sorry you didn't post way back when you started HCQ because I could have given you my experience. It was my first DMARD too, though I'm seropositive & I started steroids at the same time, along with a couple of NSAIDs. It was as positive as an experience as you've had though I hope yours continues to be for longer, mine saw me having to stop HCQ as it just stopped working. That said I'm 9 years post diagnosis, no joint replacements & pretty well controlled, though I do need to chew the ear of my Rheumy about a couple of things that need attention at the end of this week!

    Please do continue posting, I'm sure your experience will give hope to those newly diagnosed & there are quite a few of us who try to post positive, encouraging comments, just sorry you didn't happen upon them when you needed them!

  • Great that your in remission and long may it continue

  • Brilliant news about your remission so good to hear about this. Thank you for sharing.

    Carol x

  • Thank you so much for sharing the good news of your remission and long may it continue. It's gives the rest of us encouragement that it could happen for us too. Hugs

    Jan

  • Lovely to hear you are doing so well

    I too am only on this medication 8 weeks in so hoping to do as well. Take care

  • A great account, thank you. I love that you refer to the disease being in the shadows, rather than gone- a reminder to take care and cherish the time that you’re well. Enjoy, and long may it last! X

  • Hi tonyaffe. Lovely to read your post. I too have very few symptoms atm - just a bit of fatigue and a swollen thumb joint. I'm also on hydroxychloroquine but only 200mg a day as any more affects my digestive system. Am also on - mtx but only 12.5 mg rather than the 20mg my rheumy would like me to be on as more also caused side effects! I too know I've still got seropositive RA but agree that good news does need to be shared -when I was at my worst early last year with even joints I didn't know I had so painful 😖 it would have given me hope. Hope all continues to go well for you.

  • Yes I'm on this too with other drugs.Wish my rheumatologist had put me on before....he thought he had.I have improved but some days are still chronic

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