Seronegative inflammatory arthritis are they right?

Hi i am new to theu group but need help they think i have seronegative inflammatory arthritis i was given 120g of steroids injection to see if it workes ? It does seem to be working i feel so much better but i don't think i have all the symptoms of this disease. What it they have it wrong? My joints hurt really bad in the morning and its hard to move but it can last all day i don't really get flare ups its just all the time .i had one really bad time 8 months ago were every joint in my limbs swelled up and i couldn't do anything. What i am asking is are they right? How do i know they have the right one?

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  • Are you sure about the 120g stereoid injection. It really sounds quite a lot. You must have had blood tests done? What did they tell you?

  • If it's depomedrone shot then 80 to 120mg is a fairly common range.

  • Thank you, sounded so high!

  • Yes thats the one it was only a one off injection 120mg but its ment to last me up to 3 months maybe .

  • For me I usually got about 8 weeks pain relief.

  • I am afraid it takes awhile to get a positive I'd to what type of inflammatory arthritis you might have. When are you next at either the rheumy clinic or your GP,they will probably take more blood to check if the markers. If they have given you antiinflammatory drugs you should take them. You aren't alone,there are a lot of people on here who have a vast amount of knowledge and good tips. Who will help as much as they can warmest Craig

  • Thanks just really confused with it all most of my symptoms fit but some don't they have checked my blood 4 times in the last your and always normal i have had xrays and they are normal but a scan showed up some swelling so don't know what's going on.

  • Hi Louis, yep had the same for a long while, after I had full scan it showed active and degenerative arthritis in all my major joints, my blood also kept coming back clear. please take photos of any swellings etc. As it was a photo of my foot with vasculitis which finally made them sit up. Trouble is getting in when you have aflare!! if you can make an emergency appointment with your rheumy, that way if you can get in the same day they can see it, and draw bloods. its hard but keep going, you will get there try not to worry your not alone, well nor I am when the voices start lol. warmest Craig

  • Yes, i think the doctors are correct. I tok have been diagnosed with sero negative inflammatory arthritis. My lower body is affected. My ankles a couple years ago started to overflow my shoes. Had hundreds of tests and surgery. I have a negative RA factor, hence the sero negative. Sometimes i think it is just a way for the doctors to give a name to something they do not know anything about.

    I was started on 40mg prednisone per day and it helped a little. Made me extremely irritable to the point of dangerous while driving. Every little thing set me off. Tapered down to for quite a while until off that drug. Almost 8 months to get off it. The first 2 months off pred was horrible.

    Then started all the DMARDS. None worked as i believe they were made for sero positive RA.

    After trying Humira and having a rare and awful side effect, i stayed away from all meds for 7 months. Then ended up in hospital with lymphoma symptoms. Fortunately not lymphoma, but still no clear diag either.

    Tried Anakinra, no worky. It is an Interleukin 1 antagonist inhibitor.

    I am now on Actemra. My CRP was at 152 when starting, 2 weeks later down to 1.8.

    Make sure you try the meds you are given, hopefully the less expensive ones work for you.

    My Actemra is costing around 1800.00 canadian per month. But it does seem to be working.

  • Hi thanks for your reply .am in uk so don't have to pay for meds as i have an under active thyroid as well. I just feel so confused i am hoping i get answers soon and i will take meds just don't want to be taking anything i don't need .

  • im negative no swelling now mine feels like atheritus stiff at moment had knee opperation that has made things worse in knee and ankle the steroid jad was it a thing called kenelouge injection. this is to well like rebooting a computer SWITCHES YOUR IMMUNE SYSTEM OFF THEN THEY HOPE WHEN IT COMES BACK ON LINE IT COMES BACK TO NORMAL AGAIN.

  • These are very variable diseases so not every person has all of the symptoms. If you were diagnosed by a rheumatologist they do have the experience to draw conclusions from a mix of blood tests, plus how you describe your symptoms, plus what they can see and feel for themselves. Very few people follow the textbook descriptions exactly. And responding well to steroids is another clear sign that it's inflammatory.

    So even if your antibody tests were negative, were your inflammation markers raised?

    And if you have uncontrolled disease then it is all the time. People talk about flares when their disease is generally (or sometimes) under control and it suddenly flares up. Until I got mine under control I was in permanent pain day and night.

    So sounds as if this could be a correct diagnosis. But it's good to ask questions and double check, so talk to your doctor if you have concerns. The more you understand about your disease the better you will be able to manage it.

  • Thanks for your reply. All my blood tests have come back normal nothing in them but thats whats confusing surly there should be?

  • Yes and no..... I have naturally very low inflammation markers (the ESR and CRP blood tests) so some doctors think that my results are normal when they are not normal for me. However I'm sero-positive for one of antibody tests (called RF and anti-CCP) so that was a bit more clear cut. Plus the pain and swollen joints! If you are negative for all 4 I can understand it feels a bit confusing.

    It's a hard choice to take these meds if you're not convinced you need them. But if the steroids are making a difference it suggests something is up. And so does painful joints. So perhaps remember that if you start on the drugs and don't feel any different you can always stop taking them?

  • I think people can get confused by the way people use the term flare up. It can sound like it is quick, however my last flare lasted 3 months and started slowly effecting only my right hand then after a month my knee joined in. Eventually every joint was swollen and I had a CRP of 179 and I had to take half a term off work. I basically feel like I have the flu when I flare and feel especially rubbish first thing in the morning. I also cry a lot! Once I saw the biologics dr they decided my medication wasn't working and I was changed from humira to tocilizumab. The swelling went down very quickly and it started working within 24 hrs. I have never had a Rheumatoid Factor so I assume I am sero negative as well. Trust the rheumatologist they know what they are doing. Once you have the right medication you should start to feel better. I hope this helped 🙂

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