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Deb1975
#1 Posted : Friday, September 16, 2011 3:07:35 PM Quote
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Joined: 8/19/2011
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Location: Manchester
Hi

I had my appointment with my specialist nurse today as recently I have felt so much stiffer, achier and exhausted all the time. During the discussion with her I mentioned the words RA and she said "oh no you don't have RA you have Sero-Negative Spondyloarthritis (I think thats how it is spelt I had to write it down!) which is different, even though the sypmtoms are the same as RA and so is the treatment and medication."
This came as a great shock to me as for the last 5 years or so I was under the impression I had RA so now I feel like a fraudster, I have told my family, friends, employers and all of you on here that's what I have! Blushing

Would anyone be able to explain to me the difference if the symptoms and treatment are the same as I'm very confused now and the nurse was very vague and basically said it doesn't matter what it's called as we treat your conditon the same way as we treat those with RA.

I'm sure you are all thinking I must have known but RA was mentioned at my 1st appointment with the Consultant back in 2005 and I never thought to question it again as I have all the symptoms and medication for RA and have continued to have regular appointments every 3 or 6 months since then with the Rheumatology Team. I obviously have never asked enough questions before but the appointments are always so rushed but today I had made a list of things to discuss.

Anyway she gave me a steroid injection in my bum to see if that would help take down the inflammation in my feet, wrists and hip and I've got to go back in 3 months to check the results of my blood tests and possibly increase my celebrex from 200mg per day to 400mg if I'm feeling no better.

Any advice would be most appreciated

Deb xx
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jenni_b
#2 Posted : Friday, September 16, 2011 3:16:27 PM Quote
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Location: nr Southampton
Hey Deb

You are ALWAYS welcome here as far as I'm concerned.

when I was going to Bath I met another Mum to be, shortly after I had Bernice. She had Ank Spond. Its unusual in women but looks really similar to RA in many ways.

Here is an excellent organisation who helped her at the time.

http://www.nass.co.uk/

From what I gather it effects the hips often along with the spine.

It can be ever so painful but is now well controlled by MTX and similar.

Exercise is an important part of things and the Min at Bath used to do special programmes for ank spond patients.

Jenni xx
how to be a velvet bulldoser
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dorat
#3 Posted : Friday, September 16, 2011 4:05:45 PM Quote
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Hi Deb,

Of course you are welcome on here!
No wonder you are confused if no-one has ever mentioned this to you before.
What I would do would be to go and see the GP and discuss this with him/her. I'm not disputing your rheumy nurse's diagnosis but my rheumy nurse has a tendency to diagnose things which are not there! Whenever I mention a pain that is somewhere other than my hands she says Oh, it's probably Osteoarthritis. In fact, the last time I saw her, on the letter she wrote to my GP she put my diagnosis as RA and OA ! This in spite of the fact she has no evidence to go on, none of my x-rays have ever showed OA. She said the pain in my knees was due to OA, there is no evidencs of this on x-rays and the orthopaedic surgeon diagnosed it as a torn ligament.
So, discuss it with your GP and then maybe he will get you an appointment with your consultant to confirm once and for all what your diagnosis is. It must be a bit of a shock to be told one thing, and then after 5 years to be told it's something else and they owe it to you to clarify your diagnosis.
Hope the steroid injection helps.

Love Doreen xx
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Deb1975
#4 Posted : Friday, September 16, 2011 4:25:44 PM Quote
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Location: Manchester
Thanks Jenni and Doreen for your kind and helpful replies.

Since posting I have had a read up on spondyloarthritis and found it mainly causes problems with your back and hips, I do have a trochanteric bursa on my right hip but my back luckily is one of the only places where I have never experienced any pain, stiffness or inflammation.

My main areas of pain and swelling are fingers, wrists, toes, ankles and recently elbows and the stiffness is always worse 1st thing in the morning all indicative, I thought, of RA.

From what I could gather from what she was saying I think because my blood tests are negative for Rheumatoid factor the nurse says it is not RA does anyone no if it is possible to still have RA but not have Rheumatoid factor in your blood?

Thanks

Deb xx
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dorat
#5 Posted : Friday, September 16, 2011 5:12:31 PM Quote
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Yes Deb, you can have RA with a negative rheumatoid factor, it is called Seronegative RA.
Quite a few people on here are seronegative.

This must be very confusing for you.

Doreen xx
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sheila_G
#6 Posted : Friday, September 16, 2011 5:59:57 PM Quote
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Location: North Preston
Hi Deb

You are not a fraud. Any one of us could have something different than we thought. I think to be fair on the med profession they don't always know themselves because symptoms are so alike with several diseases. What I don't think is right is how dismissive the nurses are when asked what things are called etc. It's almost as though they were saying it hasn't anything to do with you, it's only your body. I feel like a child sometimes at appointments and want to say "please miss can you tell me what the problem is?" but frightened of asking in case they give me detention.Huh Seriously, you are welcome on here no matter what they call your condition. It might still be RA yet.

Doreen... I have had the same treatment as you. I have a very swollen sore big toe that won't bend and often causes me more pain than anywhere else but when I asked nurse about it I got the same answer as you did. Oh that will be OA. I have also been told that my sore and swollen thumbs are OA as well. How do they know without xrays, tests etc. Baffles me but heh it's only my body. They make me very frustrated at times - bless 'em.

Sheila x
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LynW
#7 Posted : Friday, September 16, 2011 7:32:56 PM Quote
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Hi Deb

I was diagnosed with Sero-Negative RA 23 years ago. Most of the smaller joints such as fingers, toes, feet, wrists, neck and knees have been affected. Like you my spine (other than neck area) remains symptom free.

Rheumatoid Factor is not a good indicator of RA and is not usually considered a sufficiently reliable source for a diagnosis. People can be positive for RF but not have RA. The anti-ccp test is the one most commonly used, which alongside a patients symptoms can give a definite diagnosis. I had an anti-ccp test done recently (it wasn't around when I was first diagnosed), so that my medication could be reviewed. Heyho ... I am positive, well knock me down with a feather!

I think for your own peace of mind a discussion with your GP might be very useful. No wonder you are confused! Good luck


Lyn x
My son, Ian, completed the BUPA Great North Run on 15th September running for the National Rheumatoid Arthritis Society (NRAS). You can read his story at http://www.justgiving.com/ianlukewilson

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Louise09
#8 Posted : Saturday, September 17, 2011 2:02:10 PM Quote
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Location: Saddleworth, UK
Hi Deb,

Welcome to this great site. The people on here are great!

I too have no indications of RA BUT I have RA and Fibromyalgia. My ccp is negative and esr and RF all negative. My spine is fine. My mum was diagnosed with spondilitis years and years ago and was told she'd be in a wheelchair within 5 years. That was 25 years ago and shes fine - better than me some days! Sometimes I think that the medical profession like to put a name like OA to anything and everything. I have RA in my big toe but have been told that it doesnt count in the DAS score as its a common problem in women who wear high heels!!! Ridiculous!! its not a bunion!!

I agree with Sheila and Lyn, we are human not part of a text book and the medical profession sometimes dont realise it.

When I was in labour with my second baby (i knew what to expect) I had a newly qualified midwife who couldnt feel my cervix so as far as she was concerned I was only 3-4cm dilated. So why was I in so much pain!! She got another midwife who examined me and said "lets get you into the delivery room as you are fully dilated" Then my legs started shaking and the new midwife asked me if I wanted to push I replied that I didnt and she turned to me and said "well according to all the books you should feel like pushing by now!" I replied (very politely) that I wasnt a text book and asked her if she had any children. Guess what??? No she didnt. Then after about half a hour I said I wanted to push and she said I couldnt my husband looked down and saw a head poking out. She stuttered and said I'd have to wait til she put her gloves on. Stuff that!!! I know that she was a newbie and she had to learn that we are all individual but I was a woman in labour and she was supposed to help me. Luckily I only wanted 2 children!! But the moral of this tale is unless someone has experienced the same as you they cannot sympathise/empathise/understand you. I think that the medical profession should look beyond their books and listen and learn constantly and some of them do! Thats why seeking another opinion is sometimes all you need to explain things.

Only you know how you feel! Thats what I was told.

The support on here is fantastic.

Take care and keep your chin up

Lxx
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JulieM
#9 Posted : Sunday, September 18, 2011 10:42:06 AM Quote
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Oh I can sympathise with this thread- I am convinced I have Psoriatic Arth because my hands show NONE of the symptoms of RA but DO have the pitting and the pain in the first knuckle beneath the nail. However I get the same answer-it doesn't really matter WHAT it is as the treatment is the same. Well yes, actually, it DOES matter TO ME.
YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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