I was at the rheumy clinic today & they are querying if I do have RA or just severe inflammatory arthrits, this is because after several months of MTX I haven't improved & my blood results don't show any inflammation.
I'm not sure if I am happy or sad at this possible diagnosis. At least with RA there is scope for improvement with treatment whereas I'm not sure there is with severe OA.
I trust my consultant (Prof Arden) as he is a renowned authority on arthritis.
I've already had one knee replacement & am waiting to have the other one done in the next couple of months.
I've got to have a hand scan; I had xrays & bloods done today & then go back for results.
Getting a diagnosis is such a long process isn't it. But once you get your scan at least you should get some sort of answer. I hope though it isn't RA for you as it can have other effects on your body in a way, but getting an answer will help you know what you are dealing with, let us know what the outcome is? Hugs and thinking of you
Thank you - it's taken so long to get any answers! 5 yrs plus!!!
I am always unsure what the difference between severe inflammatory arthritis and RA are but I am guessing the main difference is that RA is autoimmune whereas OA is a mechanical form of arthritis and isn't systemic?
I would feel like you - and can easily imagine this happening to me as well. I think, like you, I would rather have RA because of the possibility that the disease can be modified. At the end of the day pain is pain whatever is causing it and it's exhausting so I am glad you have faith in your consultant and hope that whatever they decide that you have - they can help you find relief for it soon. Tilda x
Oh my word, that is atrocious! I am so aware how lucky I was my RAvcoming on over night and getting very quick treatment, u must be sick to death ! Hope it's not much longer then for the team to make up their blooming minds lol
Hi you do seem to waiting far to long for a diagnosis. Have to say when my started it did happen over night. I don't show at all in any blood work that has been done either. My consultant made his decision on xrays on hands feet and chest. also had a ultra sound on my hands. His conclusion was zero negative inflammatory arthritis.
Really hope you do get some answers very soon best wishes xxx
Hi Pauline I thought I had a long time waiting for a diagnosis ... 5 yrs, you poor thing.
So, I thought that OA was not generally an inflammatory process. Did he actually say you have severe inflammatory OA or severe inflammatory arthritis?
I'm asking as it took a while to get my diagnosis and my consultant was describing my condition as an inflammatory arthritis. It was explained to me that within the different groups of these arthritis like RA, lupus, sjogrens etc there were inflammatory arthritis that didn't fit any particular groups and were called non differentiated inflammatory arthritis. So just wondering what actually you're man said to you really? I really hope you get some answers and done relief soon. Rx
Prof Arden had said in the past that I had inflammatory arthritis - like your Dr he thinks that there are other groups to arthritis.
The Reg today did say severe inflammatory arthritis.
I'll have to wait & see what they come up with after the hand scan.
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I think this is just a broader way of seeing RA and I wouldn't worry too much. Inflammatory is the main thing and this doesn't mean it isn't RA. My rheumy said he was giving mine a working diagnosis of RA but things could change. I just quoted this statement of his to my GP and asked her to request that he send me for further imaging - specifically my lower spine - to check that it is just straight forward degeneration as a physio thought or whether it might be inflamed.
My GP told me to stop splitting hairs yesterday when he (GP not rheumy) used the term arthropathy in relation to my present aches and pains. He says it's all part of the rheumatoid/ autoimmune spectrum for certain so we shouldn't get too caught up in semantics. And I decided today that he was right and we can all get far too preoccupied by labels. Some people have classic RA where others seem to have a more smudgy type of RA that seems to move around the auto-immunities and present itself in new ways all the time. If you have had knee ops and the word inflammatory is used then I think it's safe enough to for you just to continue calling yours RA and let the rheumy decide on the narrower definition, just in order to get the right treatment for you - especially as MTX wasn't working. Tilda x
or inflammatory spondyloarthritis? that is also seronegative, and often doesn't even show up raised ESR or CRP.
OA is wear and tear or mechanically caused - and Inflammatory Arthritis is an umbrella term that covers a multitude of presentations. But it is the inflammation that causes the damage in the inflammatory group so there is always a drug regime involved. Sero-negative [which lots of us are] seems to anecdotally take longer to be diagnosed. I wouldn't worry about the precise name, that can take several years to settle, your is severe inflammatory and you have a good team behind you ensuring that you get the appropriate treatment:-} Keep posting and let us know how you're doing.
Cece x
Thanks everyone - it's nice to know I'm not alone!!! I had a look at inflammatory spondyloarthritis & I do seem to fit the criteria.
I guess I'm worried about how they will treat me - will they remove all medication or continue me on it?! At the end of the day I'm still in a lot of pain & needing to take cocodamol or tramadol 4 times a day just to function
if you think your symptoms could be spondyloarthritis then you will need to really fight to see an ankylosing spondylitis specialist - most rheumatologists don't seem to know anywhere near enough, and it is an awful lot harder to diagnose than RA. Check out the information and advice on the National Ankylosing Spondylitis Society web pages, especially the criteria for "inflammatory back pain" as thats the starting point. They have a helpline too. First line treatment for spondy is NSAIDs, at full prescription strength, taken regularly. That should make a lot more difference than even high doses of cocodomal or tramadol (though dont stop the coc. or tram. suddenly). If that makes a difference after 24-48 hours, then it can help confirm inflammatory arthritis (though can still be dismissed as just being analgesic effect) - thats one of the inflammatory back pain criteria. Also, in the UK, women with spondy aren't diagnosed anywhere near as often as they should be (compared with diagnosis rates elsewhere) and tend to get a wrong fibro diagnosis first - fibro tender points can be in very similar places to spondy enthesitis points, and it really needs a clued up rheumatologist to examine them in the right way to tell the difference.
Earthwitch if you read what Pauline is saying - "I trust my consultant (Prof Arden) as he is a renowned authority on arthritis" you will realise that she already feels pretty confident in her rheumatologist and that he is not dismissing her or saying that this isn't inflammatory arthritis. I think you need to be rather careful about always stressing that people with Spondy will not be diagnosed correctly simply because you feel that has been your own experience to date.
I do agree with you however that just because it's not RA in the narrower definition of the term - this does not necessarily something to celebrate. I personally would far rather have a diagnosis of RA than be told that it's some kind of undifferentiated inflammatory arthritis because it seems to me that these people do often end up being left too long in pain and without proper treatment. But Pauline may be found to have AS or PsA and may go straight onto anti-tnfs unlike you so we shouldn't imagine the worse before it's happened! Tilda
Pauline, I am sorry it;s taken so long to get sorted out. Sometimes we live with things that we have no idea about. I too was told I had inflammatory arthritis and presented only with my left hand, foot and bone deterioration in my knuckles. I am now starting on MTX and it has been a long road of pain and waiting to get a diagnosis. Good luck and hope you feel better really quickly. Good that you have a consultant you feel a confidence in and are able to talk about how you are feeling,which is important too.
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