Hydroxychloroquine advice please.

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Adge_7
Adge_7 Member Posts: 3
edited 21. Nov 2023, 07:22 in Living with arthritis

Just been diagnosed with RA in hands, wrists, shoulders and neck at the age of 76. Came on overnight, literally. Just like that. My issue is that I have been prescribed Hydrochloroquine and should be starting today but cannot bring myself to start. I have been reading upon studies that show that this drug can permanently damage your retinas (in up to 10% of people after 10 years of use and more than that as the years go on). That is a high risk in my book, especially as I have had two detached retinas and lost the sight in one eye as a result. Perhaps, I am being over-optimistic in thinking I am going to last another 10 years or more! But one hopes! This drug also stays in your body for 3 months after you stop taking it, if you have to for eye issues, and continues to damage the retinas for those months. Is the benefit/cost equation worth it? The cost is putting up with the pain and long term joint damage. Hmmm a no-win situation. Basically, I don't know whether I should start taking Hydrochloroquine or not. Any useful comments out there to help me decide?

Thanks

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  • Ellen
    Ellen Moderator Posts: 1,633
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    Good morning @Adge_7

    I see from your post that your Rheumatoid arthritis came on overnight that must have been a huge shock for you.

    Although you have been prescribed hydroxychloroquine you are understandably reluctant to take it as you have a history of retina problems. Did your Rheumatologist know this I wonder?

    Were you given a Rheumatology helpline number to call? If you were you could contact them for advice before commencing your treatment. There are other disease modifying anti-rheumatic drugs (DMARDs) which could be prescribed for you. This information might be helpful:

    https://www.versusarthritis.org/about-arthritis/treatments/drugs/disease-modifying-anti-rheumatic-drugs-dmards/


    I hope it's ok I am actually going to re-title your post and pop it into the Living with Arthritis section as I hope there people will spot it who might be able to share their experience.

    My best wishes

    Ellen.

  • Adge_7
    Adge_7 Member Posts: 3
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    Thank you. My rheumatologist DID know about my previous detached retinas.

  • Rina
    Rina Member Posts: 85
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    Hi @Adge_7 it does sound like you have something to think about. My experience is that I’ve had RA for nearly 50 years and been on hydroxychloroquine for 27 of them, and it has been the most effective and side-effect free treatment I’ve had. It’s also kept my RA in check pretty well. However, I do have to have annual eye check ups because retina damage is one of the side effects, and I have noticed that my eyesight is becoming more blurry, although that could be the chronic uveitis that I’ve got…

    It might be an idea to call the Rheumatology helpline as Ellen suggests, or maybe calling your Consultant’s secretary to pass a message on. They may be able to reassure you, or they may consider one of the other treatments - there are plenty of others.

    Good Luck, and let us know what you decide to do.

    Rina 😊

  • Emmasknackeredjoints
    Emmasknackeredjoints Member Posts: 123
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    @Rina may I ask did you have any other drug before hydroxy,

    My rheumatologist said its for low level.inflammAtion and wouldn't work for me. So I was never offered it. But I hear so many get great benefit from it

  • Rina
    Rina Member Posts: 85
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    @Emmasknackeredjoints I was on a variety of NSAIDs before hydroxychloroquine - it’s certainly one of the most gentle DMARDS and it’s always worked for me. I believe that some people take it with methotrexate.

    Rina 😊

  • Woofy
    Woofy Member Posts: 274
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    Sadly Hydroxychloraquine did nothing for me, but everyone is different. I have been nervous about trying all the different meds that I have been given in the past couple of years. ( mine also came on overnight too)

    the rheumatologist at the hospital where I go know their stuff, so I put my trust in them.

    I was desperate to ease the pain I was in, but still anxious about taking the meds. I think it’s completely normal to feel apprehensive.

  • gilly59
    gilly59 Member Posts: 6
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    I have been on hydro for a number of years with reasonable results. A couple of years ago during a routine eye test it was observed that I now have early macular degeneration, consultant halved my dose and now get eyes checked every year by either eye hospital or optician. This apparently is a common side effect, but hydro is one of few standard drugs that I am not allergic to. Currently on one of the new biologic injections (roactemra) which seems to be helping my hands, wrists and elbows from non stop flare ups

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