For Hydrochloroquine users?

nellooo
nellooo Member Posts: 17
in Living with arthritis

Hi everyone,

Sorry if this is a repetitive post, but I'm just struggling to find any info and I'm still waiting to see the rheum consultant despite being referred as urgent. I got diagnosed with RA (after a long, painful diagnostic journey) a few months ago. I am on Hydrochloroquine tablets twice a day. I've been on them for just over 6 weeks. I thought things would slowly get better but my symptoms have only progressed in severity and in the affected joints in this time. I expected to feel better and am feeling more depressed and frustrated as more time passes, thinking that I will have to start another treatment and go through this long process of waiting again whilst feeling so terrible...

Does this suggest that the drug isn't going to work at all? When I began treatment I had fairly good use of my left wrist and now I am struggling to move either wrist, and struggling with daily tasks like dressing. I'm also experience crazy levels of fatigue and have become a sleep monster.

I was interested in experiences of others on Hydrchloroquine, good or bad. I read online that it only prompts an immune response in around 60% of people. If it does start to induce an immune response, would it happen suddenly or would you expect to see gradual improvement? Would it work on all affected joints at once, or might it be more sporadic than that?

Any experiences would be very appreciated!

Comments

  • Chris_R
    Chris_R Moderator Posts: 835
    edited 18. Nov 2022, 13:04

    Hi @nellooo

    Welcome to the online community,great to see you posting.

    Everyone on this forum understands what you have been through and what you are going through as we have all had difficultys of some kind regarding our Arthritis what ever form it takes,it is hard to go through but here on the forums we try to help and advise if we can

    You say that you have started on Hydrochloraquine but so far your symptoms have got worse.

    Here is a link that may help

    https://www.versusarthritis.org/about-arthritis/treatments/drugs/hydroxychloroquine/
    https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

    Hope these help in some way.Do keep in touch and tell us how you get on and also chat to others on our forums.

    All the best Christine

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

  • stickywicket
    stickywicket Member Posts: 27,764

    It's virtually impossible to predict which meds will work well for which people. I've been on a combination of hydroxy and meth(otrexate) for over 20 years and, together, they work well for me. But hydroxy alone is quite a mild DMARD. Six weeks? Well, they usually reckon we should give any DMARD about 3 months but, if you're just getting worse, my guess would be you need something stronger.

    I can't remember how quickly or slowly it worked for me, only that the meth was crucial. You might be able to get some steroids while waiting. GPs can prescribe them. But, if they work (which they usually do - like a dream) they can cloud the picture of how well or badly the DMARDS are working. Meanwhile, your GP could prescribe pain relief and you could check out aids for all the difficult tasks on any online disability store.

    None of this will make you feel any better but, unfortunately, with RA, we so often have to play the waiting game for all sorts of things and just have to deal with life as it is rather than how we'd like it to be. You could always try ringing your rheumatologist's secretary to try to get your appointment expedited. If you can take a cancellation (ie are you available at very short notice?) that might help. Good luck!

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Woofy
    Woofy Member Posts: 360
    https://community.versusarthritis.org/discussion/58987/for-hydrochloroquine-users

    Hi nellooo.

    thought I’d tell you about my journey.

    I started my RA journey last November. It started shortly after my 3 covid booster. Never know pain like it.

    I was referred to Rheumatologist and only waited about 6 weeks. They put me on Hydroxychloraquine.

    long story short, I struggled with it for 9 weeks, and on my second visit to the hospital, I saw a different doctor.

    The doctor put me on a short course of Steroids which took away the pain almost immediately. The said doctor rang me to see how I was doing, after a chat, he prescribed Salphsalazine , which I’ve now been on about six weeks, and things are improving slowly. Hydroxychloraquine gave me mouth ulcers, and muscle pain. I couldn’t cope with the pain.

    please get back to who ever prescribed your meds, and tell them you are not coping with these tablets.

    I will say it does take a few attempts to get the right medication sometimes. Good luck

  • nellooo
    nellooo Member Posts: 17

    Hi @Woofy

    thank you for sharing this. It's very helpful to hear about your journey and I'm glad you are finally feeling a bit better! I am not having negative symptoms from the Hydroxychloraquine (although its hard to tell because I am feeling so terrible all the time) but pain has only got worse and worse. I had not heard of Salphsalazine before. (My RA symptoms also started soon after my 3rd covid booster!)

  • frogmorton
    frogmorton Member Posts: 30,048
    https://www.versusarthritis.org/search?query=Sulfasalazine

    hope this helps @nellooo

  • Woofy
    Woofy Member Posts: 360
    https://community.versusarthritis.org/discussion/comment/701410#Comment_701410

    Hi nellooo.

    I didn’t think I was having negative symptoms either on the Hydroxychloraquine. But after speaking to the hospital, they decided it wasn’t suiting me. Please don’t put up with the pain if it’s getting worse, I tried that but it was utterly miserable.

    I have hated ringing the hospital advice line, but as the rheumatologist nurse has told me, how can we help you if you don’t tell us when something is wrong. I hate being like this, but it is what it is. I am just going to take each day as it comes. I really hope they get you an appointment soon.

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