Is this RA or not. I'm very confused: So last September... - NRAS


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Is this RA or not. I'm very confused

Helzbells profile image

So last September I was diagnosed with anti-ccp positive Rheumatoid arthritis. The consultant said I had obvious tenderness in my hands, knees, elbows, ankles. I was put on triple therapy but was allergic to all dmards. In April I was told I would not qualify for biologics then I was told that may be some of my pain was fibromyalgia instead (bit of a coincidence).

My symptoms have in no way changed or improved. I was scanned in June and told there was no inflammation (they scanned my hands and feet) but fluid in my thumb joints and knees. I have one hospital saying I don't have Rheumatoid arthritis at all and another saying I do but I don't need treatment with dmards as I don't have inflammation. My GP and I are now at a loss because suddenly they've gone from filling me full of drugs and wanting to see me every three months to dropping me like a bad smell. My symptoms haven't changed but the consultant said they can't scan for pain. This is a long winded post to ask if the symptoms I have sound like RA or may be something else.I don't care what diagnosis as long as I get some treatment.

I have pain and tenderness in my knee joints. Pain is on bending my knees and feels like someone is forcing my knee caps off.

Tenderness in my elbows and pain when trying to bend or straighten my arms. Also tender if I roll over in bed and lay on them.

Hands are very stiff with pain in my thumb joints and finger joints closest to the tips. Feels like I've broken my hands as they are very tender if I knock them.

The pain in my knees and elbows isn't really relieved by exercise. If anything it makes it worse. I'm also very tired all the time.

Anyone any ideas?

15 Replies

Hi , I am so very sorry for the way you have been treated. Have you considered doing a different test ? Jointstat for example. It is said to be far more sensitive than RF(rheumatoid factor) . It can be so frustrating when bloods do not reflect how badly you feel.

I am also allergic to a long list of drugs. Has your doctor tried other DMARD's? There are serveral out there. I cannot take Naproxen, Sulla , Lefludamide , Clyndamycin , etc...The list is long but again there are many available.

Hello Helzbells ,

I don't really have any answers for you? I have Ra and fibro I was also told I have signs of OA in my hands and knees , feet and ankles too. I have secondary sjogrens and a congenital physical disability? I find it very hard to identify which disease is causing the different pain I feel?

I think that fibromyalgia can be responsible for widespread pain in many areas of the body? You say you have pain in multiple joints this may be part of the reason you were given the diagnosis of fibromyalgia?

I think that the uk has strict guldelines as to who is eligible to use biologics like humeira ? I think there has to be strong evidence of severe damage from ra before it is offered?

The disease progression you have at the moment may mean you don't qualify for this yet?

Does your rheumatology department have a patient helpline?

Mine does and I am encouraged to report any symptoms that are bothering me? Then I am contacted by a specialist nurse practitioner so we discuss what is best to do?

My Gp has also requested I see a consultant urgently when I had difficulties while I was taking hydroxchroquine ?

So I guess I am saying to keep talking to them until you feel a bit happier with your pain level and treatment plan?

Pain is pain ? If it is bothering you? you should ring up and get advice and maybe request that your treatment be reviewed and ask to bring forward your next appointment? Maybe you could request an appointment with someone who has expert knowledge of fibromyalgia and ra?

At the moment I am luck enough to be able to tolerate methotrexate and fibro pain feels like a bit of a mystery catch all for random unexplained pain? So I would love to hear how you get on?

It is so complicted because we can all have many reasons for pain? I hope you find answers and good luck xx

Paulajolo profile image
Paulajolo in reply to spzgirl51

I have been given Humira after failing on methotrexate Sulfasalazine and luflonomide due to drug allergy. Biologics are given to Prevent joint damage you do not have to wait until joint damage has occurred. You do have to fail on three DMards first to qualify.

spzgirl51 profile image
spzgirl51 in reply to Paulajolo

Hello Paulajolo ,

Thanks for the info on when you got humeira.

My post was a little clumsy earlier?

I hope you would not have to wait for severe joint damage to get a biologic in the uk? but compared to America? there would possibly need to be a higher level of disease activity (not necessarily joint damage) before we are offered it?

It can have nasty side affects and is expensive ? So we get offered other drugs first ? The more traditional dmards.

I hope it works for you?

I am a little ( I really mean VERY) scared of the toxicity of all these autoimmune drugs and a big part of me is very happy not taking them.

I take methotrexate but would love not to have too?

Paulajolo profile image
Paulajolo in reply to spzgirl51

Ah didn't realise you were in USA I guess we are luckier in the UK. I agree drugs are lethal though we are not left much choice I think Humira is giving me my life back after 18months of hell. Fingers crossed.

spzgirl51 profile image
spzgirl51 in reply to Paulajolo

Hello Paulajolo

I am from the UK but I have a very very good rheumatology nurse practioner nurse.

We were discussing drug options and she said humira was routinely given as a first line defence against Ra in the States whereas we here would be given other drugs first?

I am luck enough to be taking part in a 2 year research project to see if ultrasound can be an effective tool in monitoring ra progression compared to just using the Das score.

In the first year of this trial; if your symptoms merited it. i could have been offered humira during the first year and the threshold for use had been significantly lower than would normally apply.

I think there are strict guidelines as to when someone can be offered a biologic compared to a more traditional dmard here?

Luckily for me, my symptoms are being well controlled by methotrexate and I was never offered it.

I am now in my second year of the trial which just involves being carefully monitored.

It must be a huge relief that humira is working well for you?

I am very happy to be taking part in something which might be helpful to others in the future.

Jointstat is Canadian. The IdentRa is what the test is called in the UK. This test in more accurate than the cpp test. This newly invented test (invented at UBC so maybe that's why we know about it more than anyone else?) is best used for people who show symptoms of RA but their rheumies arent quite sure.

When I first heard of the Joinstat test...well I thought it was "witchcraft" because you had to pay for it. Then it was explained to me by my hubby's rheumy that jointstat was accurate. It is cheaper to use the cpp test and the majority of people who test positive with the cpp test will test positive with the jointstat test....but people who have seronegative RA with the cpp test may have a different resutl with Jointstat or IdentRA test.

Anyways my hubby tested seropositive with the cpp test and still his rheumy wasn't quite sure if his symptoms where RA. So he was given the joinstat test and it came back no RA . Today my hubby is drugfree & healthy. The Joinstat test proved he didn't have RA, but he dose have pseudo gout that can be controllled by diet. No more sausages or kubasa for him!!!

Well Helzbells you certainly are a difficult conundrum for your docs, huh?

I thought a few weeks ago you posted that they confirmed RA and you were happy to move forward with new treatment? That's changed again? bummer.

Did you have any imaging done last September? And what was you anti CCP score?

There is no test that can confirm or deny RA. IndentRA test suggest to have all three test done; RF, anti CCP and their test. They believe it helps because you can be negative in one but positive in another and therefore have more chances of getting at least one positive test.

One positive test is enough to suggest RA. Anti CCP remains the most specific test for RA while IdentRA test is a little bit more sensitive. You already tested positive for anti CCP...

What is clear is that in order to get an RA diagnosis you need to have clinical proof. Each doctor has a little bias as to what constitutes a tic on the box. They add up the tics, which includes blood results, number of swollen joints, etc. and if they fit the ACR/EULAR diagnostic criteria for RA they will then most likely confirm RA.

Where you get one doctor saying you have RA and another saying you don't is likely because one is looking for 'classic' RA symptoms and another is looking outside the box.

Some of your symptoms don't fit 'Classic' RA. For instance almost all doctors will say the DIP joints are NOT RA. ( the joints closest to the tip of your finger). And if they are affected it is much much later in the disease process.

'Classic' RA also starts in the small joints of the fingers and feet and later goes to the bigger joints.

It's more common for the thumb joint to be OA--So if your doctor likes to follow 'more common' classifications then this may be dismissed.

How long in the morning do you get stiffness in your hands? Can you make a fist? Again, 'classic' RA Symptoms.

I think a big thing is whether or not you have any imaging from when you were first diagnosed last September. Wouldn't this confirm that you once had Inflammation and now either through the 5 months you were on steroids or other meds helped take away the Inflammation? I really don't know-

Another big head scratcher is that steroids worked for you. Hmm, Doesn't that count for having some kind of inflammatory arthritis?

If you really feel like you have RA can't you ask to see someone else who may think outside the box?

I really hope you get some answers soon.

Big hug.

Hereford are saying I have RA but can't undergo any treatment because I don't exhibit inflammation on the ultrasound in June. I had X-rays last September that showed nothing but the consultant said my joints were swollen tender and hot. Apparently finger tips not common but can happen. Can't make a fist with my left hand. Takes me about 40 minutes to get going it's like I've been run over with a truck

It scares me to death that they won't treat with a DMARD until one has experienced significant joint damage. That's just cruel. RA is definitely not a one size fits all Dx and just because someone that particular Dx, it doesn't mean they don't have Fibromyalgia. Since 2004 I've had no less than 8 different rheumatologists (mostly because I constantly relocated due to work) and fortunately for me the very first one was a very good one. Extremely compassionate, a great listener and very interested in helping me feel better. I went from her to another who told me it was all in my head despite having a sed rate that was in the 60s and a whole list of other tests that clearly showed inflammation. The rheumatologist I have now is just the best and he's the one who Dx me with RA on top of everything else. He actually showed me in my prior tests and imaging where it had been missed so we are estimating I've had it for about 8 years on top of the PMR, GCA and fibromyalgia that I've had for over a decade.

So I'll close by saying what I always say, your pain deserves any and all attention and resources that can be brought to it. I hope you can find some help and someone willing to go the extra mile to help you protect your joints and give you some relief from the pain and swelling. I hope you get answers soon.

Take care!

Best ~


GranAmie profile image
GranAmie in reply to Nitrobunny

On the ball reply NitroB! - do you still have PMR? I've often wondered if it is a catch-all diagnosis and a pre-cursor to RA as i had it for 13+ yrs b4 RA diagnosis in 2015 when rheumy told me it was obvious I'd had RA for some years? I assumed the hi dose steroids for PMR had masked the pains etc?

Nitrobunny profile image
Nitrobunny in reply to GranAmie

At the moment the PMR and GCA seem to be in remission and I hope it stays that way as I'm no longer taking Actemra. I'm actually quite hopeful because I'm a week past the time I would have had an infusion and I'm actually feeling pretty good. Exceptionally good. I'm always cautiously optimistic because since 2004 I've been in and out of remission with the PMR no less than 6 times. My mother had PMR as well but fortunately for her she had it once and stayed in remission. I tolerate prednisone much better than she did. The prednisone did great damage to her in short order and she lost her eyesight due to it. I'm still weaning from the prednisone very slowly so it's possible it's masking the PMR but I do know my RA is flaring a bit. There are distinct differences between the two and after all this time I know what areas are affected by what but in the beginning when a patient is in such bad shape and everything is flaring everywhere it's hard to tell what's what. The patient is in agony and the doctor (a compassionate one) will generally throw large doses of prednisone just to knock it down. Great for the pain and inflammation but bad as far as getting a quick Dx because the prednisone starts to lower numbers and mask symptoms. As I mentioned before there was no mistaking the GCA when it landed me in the hospital twice in one month. Thank heavens there are no signs of that wicked monster right now. I was communicating the RA pain to the old rheumatologist correctly despite the prednisone. He and others dismissed it but as I said the evidence was there. He completely missed the joint damage on the imaging and an MRI I had done of my foot and ankle that was done for a tendon issue I have from being an athlete. When I started with the rheumatologist I have now he literally spent 40 minutes with me looking at everything and while the imaging was for something else, it was an incidental finding that told the tale. So lesson learned I suppose, I would have liked to have had the knowledge about the RA to prevent the joint damage from before but I'm doing everything to protect my joints now. The GCA is still the number one concern to my rheumatologist and he's made that abundantly clear. It has to be because of what it can do so quickly. I really like him. He's been wonderful.

Like you I'm also suspicious that they've changed the diagnosis because you don't qualify for Biologics....

I think a long hard talk with your GP is needed. At the very least they should be prepared to continue to monitor inflammation levels, as if these start going through the roof then there's definitely something other than fibro going on. And at best they should be referring your for a second/third/ fourth opinion - whatever it takes. Good luck.

Hello Helzbells! I am pretty new here and just saw your post. I understand it was two years ago but I was wondering if you have had any luck with that diagnosis? I have your exact same issues. All of them. My Rhemy has stated several times I see some inflammation in your blood work but I am showing only a 14 in the RH scale. This I believe is negative. Scans show nothing. I was diagnosed with fibrom to and a lot of times it goes together with RA. She put me on MTX and I am taking my third dose tomorrow. It is the only one so far that has not given me an allergic reaction. I had to keep coming back though and had been fighting for two years for a diagnosis. The diagnosis is important as it helps to determine how to fight the pain especially with RA or any autoimmune disease. Don't give up. I' m not. But I would like to know how you are doing now.

Hello Helzbels, from just an ordinary lady in Australia. I totally get where you are coming from. It is SO confusing for us newbies to all this stuff. I can only relate to you my experience and see what you make of it, as I am just a patient, not a professional. I was diagnosed with Seronegative Arthritis in May this year and put straight onto high dose Predisolone with reductions every few days/weeks to a much lower dose. Yes I had bone and muscle pain and was tired, lethargic, just feeling pretty down and unenthusiastic about most things. I had lots and lots of blood tests at the time and it showed up nothing at all. I was presumably very healthy and 'normal'! After not being able to reduce my Pred's below 7mg over time, and my Dr wanting me to get off it gradually, she sent me to a RA Specialist in October who wanted me on Methotrexate and Folic Acid treatment right away, so as to 'cover' me for when I reduced my Preds. I felt like it was all just too easy to say 'take this', especially without a real diagnosis, so I asked a lot of questions and looking online, found this forum. The people here were very supportive and kind, and probably more helpful because they are real people with very similar symptoms and issues. They also have experience about taking their meds and where to go for help etc.

I realised on reading about everyone else's extreme pain and discomfort, that I was coping fairly well by comparison, and probably didn't have RA. Therefore I was very pleased I hadn't just gone straight onto the Mxt as was prescribed initially by the Specialist. I have since been able to finally get on with all the tests that were ordered - bone scans and MRI's etc, (which take months to get an appointment for over here), and the results show some liquid around a couple of joints, but mainly normal wear and tear for a 64 year old.

If you AND your Dr are confused then I gather you need to find a way of coping with your pain until you get a proper diagnosis - you sound worse than I was. Both My Dr and the Specialist were of a mind that I probably had Polymyalgia Rheumatica, not RA, in the end, which sounds to me like a distinct possibility for you as well. (It didnt show up in testing though) It is very painful in all those places you describe, and it can be hard to diagnose for some reason as well. Has he tested you for that one? (PmyR)

There are many different types of Arthritic illnesses apparently. So it can be a very long slow process, and therefore if you can find a way of managing your pain without drugs or with a different type of drug until you find your diagnosis it might be helpful. I am so sorry you are in such pain and discomfort, and will send you only good thoughts and vibes from all this way across the world. Take care and stay positive, you will find a way through, it just takes time and patience. Sending you love. xx

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