Hydroxychloroquine etc

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Miranda
Miranda Member Posts: 23
in Living with arthritis

Hi all,

Sorry to be posting again. In another flare!

I wonder if I could ask about your experiences taking hydroxychloroquine. I was offered it a couple of years ago for my other autoimmune conditions (though I am not yet diagnosed with rheumatoid arthritis - only osteoarthritis so far). I will be having antibody blood tests again soon, but they have not managed to pin down RA or lupus. I suppose that brings me to my other question: what was your diagnosis journey? Is it normal to take an absolute age to get diagnosed?

Any stories about this med or your diagnostic journey gratefully received. 😊 Thanks.

Take care,

Miranda x

Comments

  • Woofy
    Woofy Member Posts: 277
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    https://community.versusarthritis.org/discussion/59293/hydroxychloroquine-etc

    Hi Miranda.

    my journey has been similar to your.

    my diagnoses wasn’t straight forward either. I only had one raised inflammatory marker, but presented with all the symptoms of RA. It has been a painful journey this past year and 3 months. I tried Hydroxychloraquine for nine weeks, it didn’t agree with me, so I had to come off of it. I have had two short courses of steroids, which were amazing.

    I am now about 9 weeks in on Sulphsalazine, which have helped a little, but I am still having pain. I still take Naproxen twice a day, and paracetamol in between if I need it. I have a review next Monday at the hospital. I don’t know if they will change my meds again, but I have to believe they will get it right eventually. I think everyone responds differently to medication.

    are you struggling?

  • Cath100
    Cath100 Moderator Posts: 40
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    Hi @Miranda , Thanks for your message

    Sorry to hear that you are in a flare, sounds like you have had a few recently which can't be easy for you at present. It can take some people a while to get an official diagnosis of an inflammatory type of arthritis, and sometimes people are diagnosed with 'inflammatory arthritis' as their official diagnosis and do not get a specific type given. The main thing if an inflammatory type of arthritis is suspected is to be under the care of the rheumatologist or to have a referral by the GP completed.

    It might be helpful if you want to read about other peoples' experiences of being diagnosed to read our newly diagnosed section here

    https://www.versusarthritis.org/about-arthritis/newly-diagnosed/

    As mentioned already, everyone does respond differently to medications and you can find out a bit more about hydroxychloroquine below but if you have any concerns or queries about it do contact or speak to your rheumatologist nurse, you can also give the helpline a call if you want to chat further or would like some more support around managing your flare. They can be very helpful too.

    https://www.versusarthritis.org/about-arthritis/treatments/drugs/hydroxychloroquine/

    Thanks for your message and do contact us again

    Cath100

    (Moderator)

    Need more help - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm

  • Miranda
    Miranda Member Posts: 23
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    Hi both, thanks very much for your replies.

    Woofy, that is interesting about hydroxychloroquine. My main worry with that one is what it can potentially do to your eyesight. I heard, bizarrely, that it can change your eye colour?! I have been in a flare since before Christmas and it is hard to keep track of the changing nature of the pain. I had a fruitful appointment with the physio this week, though, who examined my spine, finding lots of pain on and around my mid-spine. Only a year ago the damage was concentrated in the upper back. I am also seeing my osteopath again. Interestingly, he previously said that somebody with my health background normally has something inflammatory going on, even if it’s low-level.

    Thanks very much Cath for all that info. I will ask my GP if she will carry out the relevant blood tests again when I see her next week. I wonder what the longest time is a patient has had to wait for an accurate diagnosis? I was hoping that there would be a more straightforward way out of this chronic pain, but this does not look likely. Happily, the last few days have been better - the more my muscles have relaxed, the less pain I have been in. I wish there were more categories of painkillers besides paracetamol, opiates and NSAIDs. Provision is very poor for people with arthritis.

    On that rather downbeat note, I wish you all a lovely, reduced-pain evening!

    Take care,

    Miranda x

  • stickywicket
    stickywicket Member Posts: 27,717
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    I've been on hyeroxy for over 20 years along with methotrexate. No problems. I have RA. Straihtforward diagnosis. No 'journey'😆

    It's not at all unusual for a diagnosis to be simply 'inflammatory arthritis'., though.The meds are the same. A precise definition doesn't seem to be too important.

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • JenHB
    JenHB Member Posts: 135
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    I agree with that, at my first appointment in October 2021 the consultant said that if I was 15 she would have diagnosed juvenile arthritis. They initially were 'watch and wait' but then in Feb knees were getting grumpy again and my knuckle also became swollen so was then started on MTX. I've now had hydroxychloroquine added to the mix

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