Hi all, This is my first post as i need help and clarification. Back in March this year 2014, out of no where i woke up with Swollen fingers in the AM, did think much of it. Long story short. After a couple of months and no help from DR's i couldn't walk in the AM. My hands were so swollen and painful and would "catch" on everything. It got to a point where sitting still was painful, moving was painful, i could not grip onto anything, open any bottles or make a fist. I am in a mess.
However all my blood tests were fine, so were my x rays. I ended up paying to see a Rheumatologist, who said they dont know, it might be RA. And gave me a Depo medrone 120 injection. Well i was back to the old me. Perfect, thank god. I thought it was all over. 2 months later now October the Rheumotologist is dismissive but i am back to waking up with tingling pins and needles in my hands, slightly sore wrists and catching clunking shoulder.
Please help where should i go next?
Im so scared of RA changing my life im 30 and extremely active and physical.
Can it be anything else?
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hall10
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I'm not qualified to be able to answer your question, but it does sound like something inflammatory if the steroid jab gives temporary relief . When I used to have them it was like a wonderful pain free holiday - but you can only have them in short term as long term effects are not good. RA can be sero negative (ie your blood doesn't show either of the two signs (rheumatoid factor or anti-CCP)), and in early stages may not show on x-rays either. But if you don't have raised inflammation markers that's odd. It could perhaps be fibromyalgia, and there's a similar HU forum for that.
But what I do know is that it can take a long time for RA to be diagnosed and it lurks in the background for ages. So you have to be persistent and keep going back to GP to push to be referred to NHS rheumy.
The other suggestion is to look on NRAS website and give their helpline a call.
But even if it is RA, it doesn't always change your life completely. I've been diagnosed for years now, and am stable on the drugs I have so am 95% back to normal.
Hi Hall10. Unfortunately no one here can confirm or disprove RA for ourselves or for others.
However autoimmunity includes many more diseases more than RA and some types, such as Psoriatic Arthritis are sero negative - which means they are often far harder to diagnose and getting treatment takes much longer. Some doctors are quite ignorant about the sero negative types of arthritis.
Problems would probably not show up in x-rays at this stage unless you had a very aggressive disease or if it had been going on for much longer than your symptoms had showed. The fact that the steroid injection helped to alleviate symptoms would usually show a rheumatologist something important - that your condition is inflammatory in origin. Fibromyalgia would not show inflammation or erode joints but certainly is supposed to be very painful - however this wouldn't be helped by a steroid injection much.
So I think the only thing you can do is go back to your GP and pester them to refer you again - making it clear that you have read up about sero-negative types of arthritis. If I were you I would ask for my autoantibodies to be tested too including ANA to help rule out Lupus and Sjogren's as contenders - although these can be sero negative too but this is much rarer.
You haven't said where you live - are you UK based or in the States? These are very different health systems and most people who use this community are based in the UK so would be less able to
advise about the diagnostic pathways elsewhere.
PS oops sorry Helix and I overlapped in cyberspace so you've got a lot of the same advice from her first!
Hi helixhelix and Twitchytoes, Thank you for the reply. I am in Gloucestershire, and have already had an appointment with a rheumy. She basically said, great you have reacted like that to the injection see you in December. What a fob off. I understand it much be hard for any DR to give a definitive yes or no. Sometimes you just need to know for your own sanity. I would rather crack on with the drugs and keep it at the level it is now.
Its nice to hear helix say "normal" can be achieved. I ski a lot and am captain of my local hockey team so being inactive is a death sentence for me.
Your information has been very helpful. Its a difficult fight when you work full time and no Dr's seems to be listening.
The drugs are very strong ones, so generally the rheumies are pretty cautious and wait to be sure. I only had to wait a couple of months (due to slow referral and getting various tests) which was frustrating but looking back I now sort of understand why. One thing I have learnt with this disease is patience! Everything about it takes a long time which is tough as we're generally now used to taking a pill for 7 days and everything gets better. Not to depress you, but it took me about a year to get stable.
But that's no reason not to push hard to get seen again by a specialist, and get better interim pain & inflammation control.
Hal10, I have a friend who owns Life science labs in Canada. They have developed a new test, Jointstat, it is more sensitive in detecting RD than other tests. It can also measure success of therapy as levels of this protein 14.3.3 are affected by treatment. I am not seronegative, however, it still took several years to be diagnosed. Best of luck. It can be very frustrating when you have no idea what is wrong.
Hi Hall 10 --- I am a newly diagnosed with sero negative RA---- It's taken nearly 4and a half years to get there.Mine was eventually discovered after I pestered for an ultra sound scan of my hands--- up until that point my rheumatology team were very dismissive of my symptoms. They now all agree that I must have been suffering with it for all that time. Please dont let your doc fob you off.
Not sure what shows up--- but something that was glaring obvious to the sonographer- she told me that it was RA there and then and the rheumatologist rang and asked to see me 2 days later!! I woke up one morning 4.5 years ago with swollen , hot, really sore hands , lasted weeks then improved slightly. Then in went to both knees. Its now mainly hands, wrists and fingers. To me , apart from just the swelling-- I feel like everything under my skin, from my shoulder down, is on fire. My pain is worse at rest- if that doesnt sound daft. Methotrexate, hydroxy chloroquine and folic acid-- not started yet as going on holiday tomorrow. Making the most of the all inclusive as I believe you can't drink whilst on meds. I too was a skier but can no longer pit boots on-- maybe meds will rectify that. keep pushing for answers--- which I should have done sooner. has the injection worked?
Once you've got used to the meds you can drink a little bit...I was told no bingeing, and not on MTX day but a one drink a couple of nights a week is ok. More than a couple of drinks a week and my liver protests -which shows up on the blood tests.
Thanks Helix--- dont drink a lot but do like a couple at weekends. One question I keep wondering about is how do they know which part of the body is affected by RA unless you scan all the painful bits. Have you any idea? Or does anyone else know? And if my bloods are normal how will they know if they have got the" disease" under control?
The theory is that the docs use a mix of the blood tests, your physical symptoms and how you yourself describe things to assess what's going on. And tho' it' s a very variable disease there are patterns. look at this site for the commonly used DAS28 approach
I'm also someone who has very unreactive blood tests which rarely show much. My rheumy is wonderful, and thorough, so I do now trust her to know her stuff and not just look at the numbers on a piece of paper.
Thanks for that---- think my rheumatologist will look after me now. We had a " blip" at the beginning when she only agreed to me having a scan to ' make you realise Jacki that you are a menopausal woman with oa''. I decided to stay with her after she apologised profusely- my thoughts are that she will look after me properly now.---- I hope!!!!!
It is inflammation which shows up on ultrasound. Unfortunately my own rheumy doesn't use this method and it isn't available where I live. My inflammatory markers are always either raised or high and, like Jacki08 I have burning sensations in my feet, hands, arms and legs which are much worse when I'm still. My GP and I both believe that this is the way my RA shows itself but my rheumy just looks for the same classic signs that were in my wrists and hands when he diagnosed me. So if you have the opportunity to get your joints tested for inflammation with ultrasound I would seize it. I'm sure I'd be on different medications, possibly ones that I would tolerate and which would have given me my old life back by now if I'd been offered this form of testing ever. I hope you get some answers soon.
Hello hall10 when i went to my first rhumy appointment i had bloods done with a physical check up then they did a hand scan well one of my fingers glowed so bright it was strange to see the rest of the hands had red flashes showing up, so the inflammation shows up if it is present at the time. I am now on MTX, Hyroxy and folic acid this all happened in Jan.
Hope you get some answers soon because not knowing can drive you mad.
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