rheumatoid arthritis

[Hurting2012]

Hi I am new here, I was just referred to a Rheumatologist because my rhfactor came back at 32 and my ana test was 320 but all other tests were normal. Is this similar to anyone else? My doctor thinks I have rheumatoid arthritis

[Moomin8]

Welcome to the madhouse 🤪which none of us planned on being a part of. Keep talking to us...we're ok really 😊

[springcross in reply to Moomin8]

😂😂

[Exhiker]

They're a lovely bunch here. Even though ive been told I haven't got RA now after all , I still come back for a visit. 🤣🤣 I prefer it on here to where I'm suppose to be.

[springcross]

Hi Hurting2012 and welcome. You've come to the right place for lots of advice and support. 😊

[Sheila_G]

Hi. I hope you haven't got it but if you have, this is the place to be. We are all in the same boat and if you need to ask questions, moan, are worried or just need to chat to people who understand you can do on this site. Post any time. All the best.

[Hessie5]

Hi - an excellent idea to join if you do have confirmed RA. I had an RA factor of 35 and jumping pain - when I was told I had RA. The test that sealed the deal was a CCP - this was 205. Hopefully, you have a good GP who should help you should you have it. But the jumping pain was a big clue. Take care, Hessie

[Hurting2012 in reply to Hessie5]

hi, thank you for the welcome. what do you mean by jumping pain

[Hessie5 in reply to Hurting2012]

Oh, so sorry! The pain started in my calf, then the next day, it would be in my knee - then hands - my consultant said that was a sign of RA.

[HappykindaGal]

Welcome! We’re pleased you’re here and sad you’re here too. If that makes any sense whatsoever.

Whichever way, you’re in safe hands here and you’ll find lots of support and a few laughs too.

[Boxerlady]

Welcome! Lots of advice and support here and great information on the NRAS website.

[Mmrr]

Welcome, but sorry to hear that you may have RA.

It can be a bewildering word when you are first diagnosed, so do ask lots of questions to the forum, there is usually someone who has experienced what you have and will offer support.

The NRAS website has lots of information too, some about what to expect from your first visit to the rheumatologist that you may find useful.

I have seronegative RA, so my bloods are normal, yet I still have all the signs and symptoms of RA. A few of us do on the forum, but most people, will like you show RA markers in your blood, which makes diagnosis easier.

I hope your appointment with the rheumatologist comes through soon.

[Hurting2012 in reply to Mmrr]

how did they diagnose you with that if you dont mind me asking, im confused by my ccp being negative

[Mmrr in reply to Hurting2012]

Diagnosis is usually made on a number of factors , bloods being one of them , MRI scanning and signs and symptoms. Diagnosis can also take a while, years as in my case to become reasonably sure what is going on. I eventually got a diagnosis based on synovitis, tenosynovitis and some erosions being seen on MRI and my signs and symptoms (swollen achy joints and overwhelming fatigue being the two most obvious ones).

[Hurting2012 in reply to Mmrr]

he said he wasnt positive he thinks it what it is so referred me to a rheumatologist

[Mmrr in reply to Hurting2012]

That's good, only a rheumatologist can give a diagnosis not a GP, but it sounds like your GP is on the ball. Likewise only a rheumatologist can treat RA too. I hope you are seen soon 🤞

[arvine in reply to Mmrr]

Hello Mmrr, can I ask what your symptons of RA are, thank you

[Mmrr in reply to arvine]

My first obvious symptoms were a red inflammed area on the upper aspect of my right foot at the metatarsal area about the size of a 50 p and extreme fatigue with brain fog that left me unable to move / think. I just felt so unwell and hot with a sore neck / back /hips too. Looking back I had been increasingly feeling unwell for a few months prior to this, missing occasional but an increasing number of after work / weekend walks and other social activities, which was most unlike me. I was high energy, lean and fit prior to RA. By the time I was seen by a rheumatologist 5 months later I had piled on weight, the obvious inflammation my foot had gone down, leaving me with just the aches, fatigue and brain fog. I'm seronegative and received very poor care, after approx 2 years was diagnosed with seronegative RA.

I increasingly believe the diagnosis of RA to be incorrect. I suspect an undifferentiated spondyloarthropothy and hope to raise my diagnosis with my consultant at my next appointment in June. I've had pelvic/neck/ back issues all of my adult life.

Apologies for the long reply.

[Hurting2012 in reply to Mmrr]

oh my gosh, sounds just like me however i have no rash. tops of feet and ankles shoulders knees but back, hips and neck are the worst hurts to even try to rub hips. i have the brain fog , fatigue, packed pounds on. keep us updated curious to find out what they tell you

[Mmrr in reply to Hurting2012]

I will do.

[arvine in reply to Mmrr]

well yes, had the RA and anti cpp test done, and was negative, but on waking everyday, lasting from 3-4 hrs right on into afternoon some days, have hand, fingers, neck, back, feet issues, been on pred for 4 1/2 years, down to 5 mgs so because blood test showed negative, rheumy has decided I just have degenerative disease, old age and arthritis, kind of leaving me to wonder, no more PMR? and what do I do now to cope with the pain, can,t take anti inflammatory,s being on pred, so just had a physical by GP, had extensive bloodwork done, back exray, the whole deal, see him again in 2 weeks, and is open to me getting 2nd opinion,

[arvine in reply to Mmrr]

oh and also, do you find as day goes on, pain reduces, feel better late in day?

[Mmrr in reply to arvine]

Yes, most definitely begin to feel better as the day goes on. By evening I can sometimes feel quite well, don't want to go to bed....Did I pick you up correctly, in that you said you can't take anti inflammitories because you are on prednisolone?

I take daily prednisolone, NSAIDs, leflunomide and a JAK inhibitor.

[arvine in reply to Mmrr]

yes I am still on 5 mgs of prednisone, is that different from prednisolone? just had just about every blood test available I think done yesterday, some are flagged Hi, as I can get access to my test on line, don,t see GP unitl May 31, so far, did have copies sent to my rheumy, who hasn,t been very helpful last few mos

[Mmrr in reply to arvine]

They are the same thing, you can take anti inflammatory meds whilst on prednisone, ask your GP.Many of us take both.

[arvine in reply to Mmrr]

omg! you are kidding, both GP and rheumy have told me I can,t take any anti inflammatory while on prednisone, only tylenol, which does nothing Ive told them, what dose of pred are you on please?

[Mmrr in reply to arvine]

I'm on a steroid taper ....I'm down to 8 mg per day. But was taking 20 mgs a few months ago.Diclofenac acid (voltarol) is a non steroidal anti inflammatory, which I've taken for 30 + years.

I now also take a DMARD and a JAK inhibitor.

Prednisolone/ prednisone and anti inflammatory meds are the main treatments for RA.

It might be useful to speak to your GP and rheumatologist again... perhaps there has been some misunderstanding somewhere ?

[Goldsky]

Hi Hurting, welcome, we will all help you if we can. Very best wishes.

[oldtimer]

You are welcome here to ask any questions and there is a useful search box to find posts about similar questions that you might have.The NRAS website is a mine of information and if you look at the newly diagnosed pages it will help a lot with preparing for your appointment with the rheumatologist.

Be prepared, though, for uncertainty and delays in getting answers. You will probably need lots of other tests as well as time to tell how you are developing and how you respond to treatments. It's a long haul unless you present with a absolutely classical clinical picture which most of us don't.

[nomoreheels]

Hiya Hurting2012, welcome. I'm sorry to hear you may have a Rheumatoid Disease. It’s not helpful when your doctor does blood tests & doesn't explain what the results indicate is it? Well, only a Rheumatologist can put all the pieces of the jigsaw together & diagnose I’m afraid but your results do show a likelihood, if you have joint involvement too. Here in the UK initial blood tests taken by our GP usually include RF & maybe anti-CCP (the latter is a newer one & more sensitive than the former), along with inflammation levels. Can I ask, you said all other tests were normal, does that include your inflammation levels? They are the ESR (chronic) & CRP (acute) figures. If they were within range can I also ask if you've been taking an anti inflammatory &/or pain relief prior to & at the time the blood test was taken? If you did it can can give a false result you see. Before I was officially diagnosed my GP asked me to stop taking the pain relief & NSAID she prescribed a few days before my diagnostic clinic appointment so I’d have an accurate result. I wonder as well if your doctor is being thorough or if he suspects something else as whilst ANA can be found in RD it's not often tested here, it can be found in other autoimmune conditions though.

Maybe a browse through the NRAS site would be a starting point in understanding what may be going on nras.org.uk There are reputable reference sites specifically for the US too, keep to them & you'll receive good info.

If you have any other questions we'll be happy to help if we can. Please bear in mind though that guidelines, names of meds, lab results/blood test values & such may differ as we're in the UK. That said most things are similar & we do have other members in the USA so there's usually someone who understands by experience. 😊

[Hurting2012 in reply to nomoreheels]

hi, my sedementaion rate was normal and my cbc normal and ENA reflex normal just rh factor test high and connective tissue cascade showed high titer and diffused speckled pattern the ccp test was negative

[Hurting2012 in reply to nomoreheels]

yes i also taking motrin 800 and pain relief when tested

[nomoreheels in reply to Hurting2012]

The ibuprofen & pain relief could have skewed the results some but I would have thought your doctor is sure enough, or taken them into account with referring you to Rheumatology. It might be worth thinking of stopping the ibuprofen & pain relief a few days before your diagnostic appointment so you ouch & oooh appropriately when your joints are manipulated!

There's no doubt your doctor was extensive in testing, way more than we would have here to be referred. You may find this interesting reading mft.nhs.uk/the-trust/other-...

Keep in touch, let us know how you get on when you are seen?

[Happy5]

Well sounds like your getting the neccessary checks so if you are confirmed with RA you'll be sorted by a rheumatology team.

As said by others welcome, nope none of us saw us being here , but least we learn to cope from each other.

Keep us posted

😊

[Helen-NRAS Moderator]

If you would like support, information or just someone to talk to, our NRAS helpline is open every week day from 9.30am to 4.30pm nras.org.uk/helpline/ 0800 298 7650. Or have a look at our website nras.org.uk. Kind regards.

[smilelines]

I had normal blood work so my experience was different. The rheumatologist was able to feel what they call bogginess in several of my joints. With this and my symptoms I was diagnosed with inflammatory arthritis. I would think the rheumatologist you see will check you over carefully for this bogginess and other symptoms and you will get some answers to why you hurt. I went to my appointment alone and wish I had taken someone with me to help me remember what the doctor had said. I was just too overwhelmed to comprehend everything. Glad your GP has referred you. All the best.

[auntypank]

my advice---- keep asking until you have an answer! RA is not fun. the sooner you get a handle on it the better you will be able to cope. I have had RA for 14 years and it is a roller coaster ride. Good luck xx