Good morning first post on here , been taking Prednisolone for 2 1/2 years for ? PMR. Now thought to have seronegative Inflammatory Arthritis ? RA I have tried Sulphasalazine with awful side effects causing serious palpitations and weakness in arms and legs.
Now on 3.5mg Pred and one week into Hydroxychloroquine feeling worse not better but I guess I have to give it time .
how on earth do people cope without a definitive diagnosis? My Rheumatologist is really good as are my GP’s they all agree there is something inflammatory but can’t put a name to it .
I am grateful not to be sicker than I am and have considered a second opinion , in the UK and don’t care how far I would have to travel happy to go private . Be grateful for any suggestions and thank you if you take the time to read my long post .
But thank you for this amazing resource .
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Hi, I was diagnosed as seronegative inflammatory arthritis in April. I was struggling at first not having had a more concise 'name ' but have settled into realising trying to get things under control is more important. Am currently on mtx injections and hydroxychloroquine. Also have osteoarthritis and fibromyalgia. One day I may have a definitive answer but I was advised to read the advise on treatments as much the same as RA.
Interesting post because I’ve had sero negative inflammatory arthritis since 2015 but I didn’t realise sero negative inflammatory arthritis wasn’t a definite diagnosis.
That’s exactly what I thought but I was sure the original poster said somewhere that she didn’t have a definite diagnosis which surprised me because I always thought sero negative inflammatory arthritis was a definite diagnosis. 🤔
Hi sorry I wasn’t clear my regarding “Difinative Diagnoses” I simply meant that first it may have been PMR then ?RA now under the umbrella of Inflammatory Arthritis and never really feeling well . I understand that IA is a thing it’s just about me getting my head around it and as others have said it is a case of trial and error to get the right treatment .
My Rheumatologist has said from the beginning that medicine and in particular autoimmune conditions are never straightforward . He has been very proactive in testing for everything he can think of .
I have same, whatever that is, exactly. My first rheumatologist used to grouch that no-one can ever have a textbook case of an autoimmune disease. I suspect he’s right about that. It’s also true that we respond differently to medications. In my case, the DMARDs (hydroxychloroquine, methotrexate) that many people use successfully nearly killed me. Thankfully I am doing pretty well on a biologic now. But autoimmune diseases and their remedial treatments seem to be very individual.
Seronegative Inflammatory is a diagnosis,there are over 100 different types of RA . For me my bloods came back positive for RA then for months negative ( RF factor) this was 20 years ago started on hydrochloroquine but stopped as did nothing.Now on metho and biologics
There is a lot of uncertainty in medicine. A lot more than doctors would like to admit. In fact they know there is uncertainty but they don't like to admit that to patients.
As others have said there are many different types of autoimmune and inflammatory conditions. But the body doesn't read the diagnostic criteria. So basically diagnosis are actually social constructs, they are 'made up' by people. Some accurately reflect what is going on, but many don't (Annemarie Jutel and Ian Hacking are two academics that discuss this).
We used to tell parents struggling to get a definitive diagnosis for their child, that if you take them to a physio they will diagnose hypermobility. Take them to a occupational therapist and it will be sensory integration disorder; to a educational psychologist it will be dyslexia/dyspraxia; a clinical psychologist would find autism; and a psychiatrist would turn it into a problem with the parent and diagnose Munchausen syndrome by proxy or FII.
It is the same child, but through the different lenses of different branches of medicine and psychology, they are given different diagnoses.
And it can be the same with rheumatological conditions. Different consultants and GPs will say it is different things as they try to put us into boxes. But the human body doesn't fit into boxes in that way.
A diagnosis is just a collection of symptoms and signs (blood tests are signs but in themselves are not a diagnosis) and it often says nothing about what the underlying causes are. If a medication is working then it is the right one for you, if it isn't then you will be on the same round about that the rest of us are on trying to find the right medication.
I wouldn't worry too much about the diagnosis unless it is stopping them trying different medications.
My wife is seronegative. There's no doubt about the RA and SjS, she can spike the charts with the best of them. However, she's a terrible patient when it comes to controlling her symptoms. We have to constantly adjust her Rx to accommodate. Yet I'm steady as a rock, highly consistent and easily managed. Everyone is different. Continue with your MDs, have faith and patience.
I wouldn't worry too much about what label it's given - and long term PMR often seems to morph into some form of inflammatory arthritis. They are just different results from your immune system being overactive nd attacking your own cells. I've had the labels Rheumatoid Arthritis, then Palindromic arthritis, then Polymyalgia Rheumatica, then Rheumatoid Arthritis, Psoriatic Arthritis, Vasculitis and back to Rheumatoid Arthritis. As long as it's recognised that it is an auto-immune condition and needs treatment, that's fine.
It's when they start saying, it's not RA because
the blood tests are not raised (I thought that's what the treatment is for?),
it's 'burnt out',
you 'look well' (! ),
'are you depressed?' (wouldn't you be when you're in pain all the time..) etc,
that it is REALLY IRRITATING!
I've had this for nearly 50 years, I know when I'm ill....
Auto-immune conditions are as wide and varied as the people who have them and the understanding of the conditions, and particularly the interaction between different conditions, is really not that well developed. I've been on a similar journey, APS then not APS, Lupus then not Lupus, RA, OA, APS again and add in another auto-immune condition or two. Like others say these are just labels so I just settle on auto-immune condition .... undefined. As long as they are getting treated, and finding which treatment works, in which dose, or combination so you can live your best life. If a second opinion helps you feel more confident then do it. I did seek a second opinion (privately) which was very reassuring .... who concluded ... there is something going on..... but what???
Thank you Autolupus I think I am getting there and now need to focus on just finding a treatment that makes me feel well . I am grateful that I am in a much better position than many others .
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