New diagnosis

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lkn
lkn Member Posts: 16
edited 28. Nov 2023, 14:04 in Living with arthritis
Hello everyone.

I've just been diagnosed with seronegative inflammatory arthritis and have been prescribed sulfasalazine. I'm hoping it will work as the pain is unreal. So far I've been on tramadol and narproxen which aren't helping. It just started late may out of nowhere so after being in A&E it's just roller coasted from their. Very scary at the start I've never experienced such pain. I got bloods back which states low vitamin D. CRP 44 and RDW. Is high at 14.2. Not sure what that is does anyone know? I'm sure I'll have many questions along the way but for now it's good to have other people to speak to and help with this pain. Take care everyone.

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  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hi lkn and welcome to Versus Arthritis forums.

    So sorry to hear you have been diagnosed with seronegative inflammatory arthritis. You may already know some of this, but I hope that you find some of the following information useful.

    Sulfasalazine is a disease-modifying anti-rheumatic drug (DMARD) which can be used on its own or with other drugs. There is a good page of information on our website including an information booklet that you can download:

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

    Blood tests
    I also found a very good page via the NHS website that explains what a CRP (C-Reactive Protein) test is and what it looks for:

    https://labtestsonline.org.uk/tests/c-reactive-protein

    Similarly, RDW (Red Cell Distribution Width ) is part of a full blood count (FBC) analysis and the site also has information here:

    https://labtestsonline.org.uk/tests/red-cell-indices


    Please note: we are not medically qualified and your questions about interpreting your results are best asked of your doctor or health professional who knows you and your current condition :D

    The Versus Arthritis website also has plenty of good information on pain management and I'm sure our members will supply lots of good ideas for how they manage their pain.

    Best wishes
    Brynmor
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    Phew! I'm glad Mod Brynmor could help out with the initials because I'm rubbish at them :lol:

    I have RA and OA and have had for years. I do the blood tests but leave others to interpret them. As long as I hear nothing I presume I'm OK.

    I hope the sulf(asalazine) will help. I take different DMARDS but the essential thing is to take some to try to dampen down our overactive immune systems and therefore the disease. Naproxen is just an anti-inflammatory. Better than nothing but it won't do anything to slow down the disease. Tramadol is quite a strong 'painkiller' though most of us on here regard the term 'painkiller' as a misnomer. All they do, at best, is to dull the pain and I prefer to keep to the lowest possible dose of the weakest possible pain relief as it can just escalate if we're not careful.

    An inflammatory arthritis does, indeed, appear from nowhere and can be very scary at first. With luck, the sulf will kick in (it can take up to three months) and things will improve. Sometimes the first DMARD doesn't work and another has to be tried. I'm not, by nature, a patient person but arthritis has taught me a lot in that department :roll:
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • lkn
    lkn Member Posts: 16
    edited 30. Nov -1, 00:00
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    Hello

    Thanks for replying. I was offered 2 different DMARDs but was told sulfasalazine would maybe cause less nausea. The other was metro. Something. I would love to come of tramadol and narproxen but not sure when this will happen in don't want to rely on either if this other medication helps. It's too many tablets to take every day not sure my gut can cope with it. I'm also on omperazole too. I hate taking tablets but needs must.

    I work full time in an office so had to make adjustments bit I'm still painful. I'm trying to stay positive though which has been difficult as I have other health issues as well which is a bummer.
  • Spiderman
    Spiderman Member Posts: 11
    edited 30. Nov -1, 00:00
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    Hi Ikn..sounds familiar to me..what about an intra muscular steroid jab?
    Might help short term?Might not...not qualified to say unfortunately !
    Chase up Rhumy team at clinic.
    Sleep deprivation can wear you down...
    Opportunities multiply as they are seized.
    Sun Tzu
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
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    Hi lkn, sorry to hear you've suddenly got landed with so much to deal with.
    If your Vit D levels are low have you been advised to take supplements? Low levels can cause muscle and joint pain, quite apart from having implications for long term bone health.I have to take VitD 'for life' now as successive blood tests suggested I don't seem to be able to make enough myself, despite diet input and spending much of the day outside, and I had had a diagnosis of osteoporosis. I take ordinary over the counter ones as they were very much cheaper than prescription ones which in any case only came with calcium which I didn't want due to causing gut problems. That also gives me the option to up the dose during the winter(on GP advice).
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello lkn, I too have a sero-negative form of auto-immune arthritis, in my case psoriatic. I have a history of auto-immune nonsense so for me this is just more of the same but for you? A very different story.

    I know that CRP is one of the measures of inflammation, anything under 10 is regarded as normal so anything above is not ideal. I too began on sulphasalazine (this was back in 2002) and I've taken many others too. Not one has ever tackled the pain and never will as I began with far too little far too late. What dose are you up to now? I was on six per day for years. I never found naproxen of any use either as a method of pain relief but others swear by it: what works for one may not work for another, ut is a matter of trial and error. I take a daily dose of Vitamin D plus calcium but thst is under my rheumatologist's orders.

    Does anyone else in your family or family history have auto-immune troubles auch as asthma, eczema, psoriasis, gout etc.? There is a genetic aspect to this dross and it can also start out of the blue. Basically the immune system (which is supposed to protect us) fires up for unknown reasons and attacks our body. The meds are immuno-suppressants, i.e. they suppress the immune system to stop it firing up thus controlling disease activity, this is the only way in which this kind of arthritis can be 'treated'. It is not curable, it is a progressive and degenerative disease but how one is affected varies from person to person.

    Try not to be sucked in by the arthritis remedies which pepper the back pages of tabloid papers, they are only vaguely relevant to osteoarthritis which is a different kind. I see that superman has suggested a steroid injection: this is not a solution, over use of steroids can bring much more trouble and it is something for your rheumatologist to advise upon . Steroids merely mask, if they work they wear off and you're back where you started. Pain is a constant with arthritis, I am a firm believer in minimal pain relief and maximum distraction so I am not focusing on it but I am lucky to be 23 years in, with multiple affected joints and haven't been pain-free for around eight years, it was far harder in my early days back in 2002 when it was only one joint which was affected. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
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    Should have clarified that pain from low Vit D levels will be in addition to that caused by the arthritis process, and so righting blood serum levels may improve things but won't remove pain from the disease itself.
  • lkn
    lkn Member Posts: 16
    edited 30. Nov -1, 00:00
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    Hi everyone

    Thanks for all your replies. I can't recall all your names yet so I apologise in my reply. I've suffered many health issues over the years some weird ones too. I was diagnosed with me/CFS 7 years ago. It dissappear after a couple of years except for the fatigue. I have dermahrapbism for many years. Itches like he'll all day but anti histamine helps. I had coccyadina probably spelt thst wrong lol. Ended up under the knife as they couldn't work out the problem until one day a doctor stuck his figure up my bump and told me what it was. Weird it felt like a hot poker for months I couldn't sit down. I've had 3 bouts over 3 years lasting months with vertigo which was horrible. Glad I've not had that first a while and as if that wasn't enough I've had hpylori sorted with antibiotics. Gut problems for years loads of test hida scan of gallbladder. Scans colonoscopy. Endoscopy etc. Still no idea what it is and neither does my gi doctor. But the pain in stomach over the right side and upper back is relentless. And now arthritis. I foundon't out I was low vitamin through bloods for my gut so got supplements. Haven't had any for couple months so I'll need to buy them myself this time. My mam has lupas and osteoarthritis. My uncle has RA. I've only started the Meds 2 days ago so it will increase to 6 per day in a few weeks. So life has been hard but I'm trying to stay positive. Oh and yeah had steriods for 3 weeks before seeing rhumetolgist they worked but he doesn't want me on them any more. That was short term as the pain with unreal. I work full time in a sales office and had to make adjustments. It's been difficult was off work for a month.with this but I'm back now and trying to get through each day as it comes. Life's weird eh....
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I can't comment on some of the things that have been going on with you as I have no experience or knowledge of them but there are obviously auto-immune issues in the family including the lupus and RA. Osteoarthritis is the most common form of the condition and is not connected to the immune system (although medical thinking if beginning to change about that).

    When multiple conditions become involved it can make disgnosis harder - there is some thinking that chronic fatigue /ME is also on the auto-immune inflammatory spectrum so it all adds up, doesn't it? I feel for you. I've always bought my own Vitamin D etc as their cost is far less than a prescription. Once we have a diagnosis of something it is very tempting to attribute everything else that happens health-wise to that one thing but that is not the case, more stuff can rock up simply because it can. I think once our system is weakened that's it, we seem to attract more trouble. :lol:

    I take immuno-suppressant meds but generally keep myself healthy by regular hand washing, avoiding those who are ill and carrying anti-bac stuff around with me. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    I can only echo DD's post. I've never heard of the additional problems you have faced and it's a credit to your endurance and determination that you are still managing to work.

    With your 'medical genetics' I guess an autoimmune disease was always a possibility. I really hope the meds work quickly for you.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright