Newly diagnosed - Seronegative inflammatory artritis

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Asnina
Asnina Member Posts: 23
edited 28. Nov 2023, 14:10 in Living with arthritis

Hi everyone,

I was diagnosed 5 weeks ago, and even though I'd researched all my symptoms and knew it would be some sort of inflammatory arthritis - it still hit me very hard. I have started on hydroxychloroquine today (the delay was while my Rheumatologist got a second opinion on which form of arthritis). I also have a history of reacting badly to nearly all medications prescribed to me in the last 12/18 months, so we decided it might be better not to start with methotrexate, and see if this might elevate my symptoms. I managed to get a gastric ulcer from minimal use of Ibruprofen to deal with an ankle injury that happened about 18 months ago and was being ignored when I would raise a self-referral with the Physio. It turns out it might be linked to arthritis (as it's in both my ankles, my fingers and my shoulders). Taking the ibuprofen may have also masked the arthritis symptoms, which were horrendous this winter (I stopped taking Ibruprophen in July, and I've had two flares (one very serious) in the last 6 months. Now the only pain meds I take is paracetamol, but only when it gets bad (I'm allowed topical ibuprofen if needed, but need to take a stomach protector prior to using it)

It's frustrating, as I used to be active and used to be able to do 6 + mile walks at the weekend. Since my ankle injury 18 months ago, I can about do a mile on a good day, much less on most other days. I can deal with the pain when I'm not in a flare (mostly my fingers ache, and sometimes my knees and other joints if it's very cold), but the ankle pain has been excruciating (I had a steroid shot 6 weeks ago to the ankle, which caused a steroid flare and I'm about 95% certain the generalised flare - as I'd been okish previously, my last serious flare was in October). Since hurting my ankle, I've gained two dress sizes. Between the weight gain and the complete and utter exhaustion, it's been a tough time. I think the worst thing is the exhaustion, which I have been complaining about to the GP for the last 3 years and all they did was take blood tests once every two months.

I've noticed that lack of sleep, stress, and overexerting myself on my occasional good days make it worse (unfortunately, I've been unable to get a good night's sleep for the last few months). I think I've had maybe 3/4 good days in about 6 weeks or more, and am currently taking each day as it comes. I'm desperate to get back to some sort of normality, and I'm hoping that the hydroxychloroquine will get me there, without any major adverse effects (I know it can take months to take effect).

The versus arthritis website & this community has been great, I've been lurking in the background, reading up on bits. I'm hoping that I take well to the hydroxychloroquine and don't experience any serious reactions to it.

Sorry for the long post.

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  • Ellen
    Ellen Moderator Posts: 1,668
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    HI @Asnina welcome to the online community.

    No need at all to apologise for the long post - you had a lot to say!

    I see from your post that you have had a recent diagnosis of Seronegative Inflammatory Arthritis and have just started taking Hydroxychloroquine. You have had reactions/issues with a few medications in the past so your Rheumatologist is being cautious with your medication. Fatigue (exhaustion can be a huge issue with inflammatory Arthritides.

    I'm so glad you have found our main site and the online Community so helpful thank you for saying so. In light of that I am going to post some links which I hope you haven't already read while you wait for someone to come along to chat.

    This one is about managing fatigue:

    and this is someone's 'story'

    My very best wishes

    Ellen.

  • Asnina
    Asnina Member Posts: 23
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    I realised I forgot to update this post, I managed to take hydroxychloroquine for approximately 3 weeks. The initial side effects had lessened, and all I had left was occasional nausea. I was still taking it in the morning (Nurses never rang me back) Bt the end of the 2nd week, all my aches and pains disappeared, all I had left was body stiffness. I then had to come off them due to an allergic reaction, I had hives up both arms, and itching all over my body. Within a week I was back to square one, and it a semi flare state. I’ve now gone 5 months without meds (long story, but doctors strike, 3 week holiday which meant I couldn’t start meds until I was back and waiting for a nurse appointment to show me how to inject Metho) meant I needed to find a way of controlling the pain. I overhauled my diet, eat much more greens, non starchy vegtables, eggs and meat. I’ve severely limited my process foods, including gluten free pasta and flour (I also have coeliac disease), limited sugar, and removed fizzy drinks. I also intermittent fast (been using Fast Like a Girl book), and have been doing much better. Although still havet got rid of the stiffness, and generally wake up ok, but by the end of the day, I am usually in pain, worse after commuting to and from the office. I have also purchased an electric standing desk, for working from home, and this has been a godsend, I switch positions whenever I start to feel pain and stiffness. Started Methoject yesterday, see my other post regarding the initial side effects which were not great. Will try to remember to update that post with progress.

  • Asnina
    Asnina Member Posts: 23
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