As you can tell from the title I haven't officially been diagnosed GP believed me to have sero negative RA after steroids taking all pain away but rheumatologists say I can't have it as I would have positive CRP and ESR however I am sure there have been people on here that have been diagnosed even though blood tests have been normal and I have seen official studies online where people have been negative in theses tests but still have RA they just tend to have no or less joint destruction then in those that test positive. I paid privately to see a rheumy yesterday and he sat there with his head in his hands didn't take no notice of my swollen finger and didn't look at any joints. Previous joints have been noted as having swelling by GP and physio's He did talk about that I could request a trial of methetroxate but I found this absurd seeing as I can't even get steroids without proving I have RA so the chances of them giving me that are non existant. I just don't know where to go from here if anyone can give any names of rheumys from similar experience would be much appreciated.
Hoping someone can recommend a rheumatologist who bel... - NRAS
Hoping someone can recommend a rheumatologist who believes you can still have RA even though inflammatory markers are normal.
You poor thing. I do get high inflammatory blood tests which shows I have some inflammation going on somewhere in my body, but the blood test for rheumatoid factor is negative so I have the type of RA you are thinking of, sero negative rheumatoid arthritis. With this you also get other symptoms though, inflammation, swelling and joint stiffness up to 45 mins in the morning before I could move, feeling like you have constant flu and exhaustion.
Sometimes you can get pain and swelling due to other conditions like osteoarthritis which is very painful but you don't get the other problems above.
I would keep a diary of your pain, where it is , score it out of 10, take photos of the swelling or hot joints. Then go back and show these to the gp and ask to be referred back to Rheumy. You often have to keep plodding away for treatment . If you do this they will see your problems and maybe arrange ultrasound scans to see the inflammation. I hope you keep pushing and get onto the gold star drug methotrexate if possible. Good luck Ax
Hello
You need to concentrate in getting treatments on the NHS, you may have to wait for your GP to get an appointment with a specialist, it will be worth it. Many private Consultants work in the NHS system, so possibly you will get the same one in the NHS. Private practice can also be an expensive option. If you have paid into the system use it
BOB
Thank you for your input Bob I have seen rheumys on NHS and they won't believe I have an inflammatory problem either hence why I went private. I have visible swelling and bone scan showed inflammation and steroids took all pain away but they still won't listen the best I get from them is I don't think we will ever find out what is wrong with you you are not alone and you should just accept it! I am sure they wouldn't be saying that if they just had to live one day in my shoes.
Sheryl.
Your bloods can show negative changes, this does not distract that you do not have any problems. Make a list, get photographs if you want and get a further referral.
It took up to four years to prove I had a problem so do not become discouraged, The reason I gave the decision I did was I went private and had extensive treatments I was lucky I had a form of medical insurance that paid a percentage of the fees, it was expensive!!
Eventually the NHS took it over.
The treatments I had had to be agreed by my GP on the NHS, some treatments were manipulation, after thirty years I feel damage was caused by this and the problems I have now include the joints they were treating, still wonder regards damage and related treatments
It may be more positive to ask for a second opinion although I do not feel they are saying you do not have a problem. Keep pushing
BOB
Thanks again Bob unfortunately I have been in this nightmare for about 4 years too initially I got told told I had CFS/Fibro.( even though knee pain started 12 years ago and was told I had fluid on the knee) anyway I just excepted the CFS/ Fibro dianosis it wasnt until GP put me on steroids and him saying them taking all pain away proved I didn't have Fibro but an inflammatory problem that I am now looking for the truth so to speak. It's just so hard to keep pushing when they make you feel there is no hope of ever getting your life back and that you must be imagining all these problems due to bloods being normal. Even though there has been proof they still dismiss it and I just can't see how they can do that.
Sheryl
Thanks Allanah yes have the constant exhaustion and feel like I am half dead most of the time just going to the toilet feels like I have done a marathon! I have seen several rheumys now and none of them will accept that I can have inflammation without the inflammatory blood tests being positive. And I had a bone scan 3 weeks after stopping steroids so wasn't in any major pain but it showed severe inflammation in both sides of lower back and mild in wrists and all I get from them is we don't use bone scans anymore! So why send me for a test then take no notice of the results sorry I know you can't anser that it just makes me so angry and upset having to jump through all these hoops when I am so incapacitated due to pain and exhaustion and they won't seem to accept anything. I am thinking of paying for an mri scan of my knees as these are the worst at the moment but don't know if any places are better than others just feel like I am in one long nightmare! x
Keep plodding away at this. I went a year before my big flare and was told I was ok, keep going with your evidence xx
Thank you Allanah I will keep going. X
Hi Shezaroo
I have low inflammatory markers, crp and esr. In fact my highest was 1.7 crp. I do have postive RA factor and anti ccp one score was 178 but I don't know which one. I have had RA for 2 years. I was first put on methotrexate which I am still on 20mg and then when it started failing my consultant added sulfasazaline. It still wasn't doing what it was supposed to be doing. I still had swelling in hands and other joint pains so my consultant decided to put me forward for biologics. I was quite shocked actually because I didn't believe I was that bad. I actually failed my DAS28 scores, you have to get 5.1 and fail 2 dmards. I got 4.73 and 4.85. My biologic nurse said I was one of those who did not show the inflammation in my bloods. To quote her, she said "I can see in front of me with my own eyes, your swelling and tenderness, plus I was having 2 toe joints and heel flaring at same time, so was shuffling at that time. To my surprise when I went back to see the biologic nurse after she talked to consultant I was offered a biologic. I am on Enbrel now. There are people with low esr's that are not showing the whole story. Unfortunately it seems that some hospitals go by numbers, which hurts me to think that people are suffering because of that. There are articles that have been written about RA with low esr. If you google you should be able to find them and maybe quote that. My Hospital is Lincoln is that is any help to you. Best wishes Jeanette
Oh the reason I got a low score on the DAS28 was because of the esr and crp. All the affected joints gave me the high score.
Thank you for answering Jeanette, I believe I have had them tests that you were positive for and I am negative for those too which is why my GP said sero negative RA but the rheumys will just not have it. I would travel to the other side of the world if I knew it was going to help me! Is it just called Lincoln Hospital? Yes I believe I have read them articles so maybe if I do decide to brave another rheumy I should print it off and take it with me. The only places I have had visible swelling have been fingers, knees and big toes. But pain is in them places plus shoulders, hips but the inside only way to describe it is it feels like it is dislocated or not in place properly that probably doesn't make any sense lol. Wrists, neck and back and I get severe pain on movement so with my knees it is when I bend them and if I sit on a chair having the knee kept in a bent position just causes extreme agony. I do think that my only option is to have an mri of knees or even just one and pray it shows what the problem is and if it does show inflammation then surely they can't argue with that can they?
try looking for a spondyloarthritis, psoriatic arthritis or ankylosing spondylitis specialist. As those are seronegative inflammatory arthritis, you might get a bit better investigation if you see someone who isn't expecting to see positive blood tests. Agree with Bob though that you need to find someone in the NHS - I went private and although it got me a diagnosis (after a much more thorough review and examination), it hasn't actually led to any treatment yet, as I'm still waiting for the NHS to accept the diagnosis.
Thanks Earthwitch you have said about this to me before, when I said about it to a doctor she said my HLAB27 is normal so I can't have that either! and as far as she knows there is only Rheumatologists. So sorry to hear that Earthwitch how can they possibly not accept that when a specialist has diagnosed you? I really struggle to believe the way me and you and thousands of other people are continuously let down by the NHS. I know there are excellent areas of the NHS it is just finding them!
Don't you just hate GPs who think they know everything. HLA B27 isn't positive with everyone with ankylosing spondylitis, and it can be negative in I think something like 30 percent of folk with PsA or other forms of spondyloarthritis. Its not required for diagnosis either. If you get any kind of relief at all from either NSAIDs or from steroids, then try to insist that you get referred to a rheumatologist to rule out inflammatory arthritis. You might also want to check out if you fit the criteria for inflammatory back pain. The list for that is on the nass.co.uk website.
I sometimes get 'normal' blood results, yet can be swollen and inflammed, fortunately my RA nurse has seen me like that and knows the the bloods don't always show what is going on. Hope that you will soon be sorted.
Thanks Lab-lover I think I need a miracle but will bite the bullet and pay for an mri and hopefully that will get me a bit nearer to find out what is going on.
I am sero negative all my markers are negative however my rhuemy believes there are other variations of the disease including inflammatory OA.
He has treated me with various drugs Sulfa, hydroxy & now MTX.
However following a hand scan he has now said that I have both RA & inflammatory arthritis, it's taken about 4 years to get to that point!
Thank you Pauline what about your inflammatory blood tests do they come back normal also can I ask who you see and at what hospital please?
Hi I have a positive RF but neg anti CCP and my inflammatory markers were all normal I had ultrasounds of joints and had inflammation in some of the joints, had steroid injections ( in my bum) and had good relief from these after 8 months was put on mthx and am doing really well.\have you had ultrasounds of your joints? you say you have shown inflammation on bone scans and this would suggest you have an inflammatory arthritis process going on. There are many types of inflammatory arthritis and I was initialy diagnosed as undifferentiated inflammatory arthritis and later this was thought to be psoriatic arthritis although I have never been diagnosed with psoriasis. I am fortunate to live in an area with a very good rheumatology service and count myself very lucky, hope you get some answers and treatment soon
crisxx
Hi Chris, no I have never had any ultrasounds did have xrays on knee shoulder and finger and they were normal and the bone scan which did show inflammation but they won't even acknowledge that and all my GP says it is down to the specialists unfortunatley the one that gave me steroids who would have fought my corner passed away. Where is it that you are seen?
Sheryl. X
Hi I am sero negative with mild changes showing on one joint on ultrasound. My consultant diagnosed on the basis of an intra muscular steroid injection " challenge ". That is if it worked then I have inflammatory arthritis, rheumatoid. Which is what happened. Not sure where you live but how about a referal to a rheumatology dept which is involved in research asthe staff may be more interested
Hi Mary I have been to one in Dudley which was a research centre and all I got was I don't think we will ever find out what is wrong with you! And that steroids make you feel better when I told him they didn't they just took all my pain away I got welll they treat many conditions that doesn't prove you have an inflammation problem just feel like I am in a dark hole with no light in sight. What rheumatologist do you see and where is it based if you don't mind me asking.
My Rheumatologist is great, I'm in Texas. I'm Seronegative as well. Meaning my RA factor"for now" in negative but my HLA-B27 in 100% genetic positive. I had never even heard of Seronegative. After an MRI and many tests this is what she explained to me & it made perfect sense. Hence why I hate lazy Dr.'s or Dr.'s that can't admit not knowing instead of referring they mis or un diagnosis. Keep it up you'll find the right Dr.
Thank you MB11 I will thank you for your words, just feels impossible that I will ever get there!
Its as every day is a new marathon with no finish line. Eventually you learn to create and grasp your own finish line..
That is so true and sums it up perfectly 
Hello, I am sero negative with normal crp and esr but high plasma viscosity. Also I have synovitis on ultrasound, even with taking MTX (by injection), enbrel, sulpha, prednisone etc etc. Years ago I was misdiagnosed - eventually finding out I had cancer! - so I really do understand how terrible you are feeling. I hope you can find a good, sensible rheumatologist and I am totally gobsmacked at how badly you are being treated. Virge
Thank you Virge excuse my ignorance but I haven't heard of plasma viscosity is that the actual name of test? Would you say I would be better going for an ultrasound instead of an mri? It just shocks me that they do this to people and you could have lost your life due to there incompetencies.
Sheryl.
Try googling 'plasma viscosity test', patient.co.uk are normally good. I read somewhere that it is a very good test as it only shows inflammation but crp and esr can be raised due to other factors. Also, I think you may be able to arrange an ultrasound easier than an MRI. My radiographer told me what he was seeing as he was doing the ultrasound which was great ..... I am rubbish at waiting for results!
Thanks again Virge the thing that worries me about have ultrasound scan is I keep being told that they only go by mri's now hence why they won't take no notice of bone scan. I will google that and have a look. I know what you mean it's horrible waiting for results you just want to know there and then!
My bloods came back the same. The GP advised me to go Private as the waiting list for the initial appointment with an NHS Rheumatologist was so long but keep my NHS appointment anyway. Private doctor looked at the bloods and said it's not RA but has been caused by food poisoning. I have since had my NHS appointment who is taking all my symptoms into account, gave me a shot of steroid and is seeing me next week to review how I have been since. Unfortunately it really seems the level of care is not consistant across the country.
I can not believe you got told your symptoms were caused by food poisoning I really have heard it all now, they just never cease to amaze me! Who are you seeing on NHS? as they sound like they would listen to the fact that steroids took all my pain away. No it isn't consistent at all and a lot of people are left suffering with debilitating symptoms that stop them from living
Im being seen by Bognor War Memorial Hospital. He was very good and helped me. I have been very confused with the steroid injection. The night after it was done I felt amazing with no pain or aching. Unfortunately after sleeping I woke up and spent three days with fever, fatigue, sickness. I feel better now and my pain is a lot less than it was before the injection. How long did you feel better for after your injection?
Maybe I need to go there I don't care where I have to go just as long as I get someone that will be willing to help! I didn't have an injection because I was told I couldn't be injected into several places at once so was given 30mg of oral steroids and within 2 days pain had gone out of small joints and withing 4 to 5 days pain had gone from all larger joints and was completely pain free had to go back after a week and he said he could see the difference I could walk properly I could squeeze his hands etc and he lowered it to 15mg which still kept all major pain away but would get slight pain in back and the odd twinge here and there but on the whole relatively pain free. Still had severe exhaustion and muscles shaking/ weakness and felt half dead so it didn't make any of that better. The rheumatologist that he referred me too made me come off them and all pain has come back. Sorry I can't be off more help with regard the steroid injection but if your in a lot less pain now hopefully it is working for you. Feel free to message any time you like if you'd like to have a natter.
Sorry to hear this, I had to have detailed hand and foot scans to prove my RA is active as all my markers are low. The results showed the inflammation clearly but it was a consultant radiographer who picked up the inflammation, not the ordinary sonographer - she was unable to spot it on the screen. Always pester, question and insist! Good luck.
Hi Annielou what type of scans did you have? You were lucky it was a consultant radiographer that looked at scans then! Just so hard to keep fighting them when they keep shooting you down in flames.
Hi again, I had ultrasound scans which were done by a consultant radiographer (he was a Spanish doctor) in the X-ray department of my local hospital. They took a while for rheumatology to organise (quite a few months) and I had to pester, remind and finally ask my GP to help hurry things up as my fingers were so swollen and painful, I couldn't spread toast some days. However the results of the scans showed several hand and finger joints were inflamed (more than I even realised) and I have been put onto the biologic drug Cimzia now. I was diagnosed with mild RA four years ago and put on methotrexate and hydroxychloroquine but my problem was convincing rheumatology over the past year or so that the meds were no longer working and my pain was worsening. They just seemed to dismiss my painful feet and hands because my ESR and other markers were low. The ultrasound scans brought about a very rapid turnaround in treatment. Ask for a GP who has knowledge and experience of RA (mine was an ex orthopaedic surgeon and he diagnosed it immediately when I mentioned sore feet and stiff fingers). Good luck. x
Hi, So sorry your having all these problems. I have sero negative RA and Osteo in my spine. My bloods always come back negative but scans in my hands and wrists showed synovial fluid in my hands on my joints and swellings. My Rheumy told me that I had one episode of RA and it would probably come back!!!!! Sadly for me it never went away. My GP, physio and OT have been so supportive and helpful. Please don't give up and keep seeing your GP. It is an invisible disease and so painful. Stand your ground as you know your own body better than anyone else. Take care and all the best. Mx
Hi and thank you for replying M, so glad you have a supportive team, unfortunately my GP isn't and just says she hoped they would have treated me but there is nothing she can do as it is up to the specialists! Thinking of changing surgeries and hoping I will get someone supportive. Many thanks Sheryl.
Sadly it can be a long and difficult process to get diagnosed as there are no simple tests to prove you have one thing or another, and there's a lot of overlap in symptoms between different things like fibromyalgia, lupus, RA etc etc. You just have to keep going back and telling your GP your symptoms and pushing for a second opinion.
Have you at least had the rheumatoid factor and anti-CCP blood tests? The RF factor can be done by GP, and it does give some indication although it's not that precise because a lot of people have RA while being negative RF factor, and lots of people without RA have it. The anti-CCP is usually only done by the rheumatology department and is more precise, if you are positive then it's about 80% certain you have RA. Of course as you say you can be negative for both and still have RA.
But if you are negative for both those tests, and also have normal inflammation tests (that's the ESR and CRP tests) I can sort of see why the rheumy's are reluctant to start you on DMARDS as they are very strong drugs that are not to be taken lightly. My inflammatory markers were low when I was diagnosed, although still above normal, but I had a positive anti-CCP reading and hugely swollen joints to the extent that I could hardly move. So there was enough for the rheumy to go on.
But there is obviously something amiss if you are in pain and have swollen joints, so I would keep going back to the GP to push for more investigations. If your GP thought you might have RA then why didn't he or she refer you to a rheumy? I personally wouldn't pay for private appointments at this stage (unless of course money's not an issue for you) as it could well be something completely different from RA. The one thing I've learnt through this whole process is that there are loads more unusual diseases than I ever thought possible!
Thank you Helix, yes all tests are negative and yes can understand the reluctance but what I don't understand is them ordering bone scan and then ignoring the fact that it showed inflammation and steroids took all pain away and they say they treat many conditions which yes again I agree with but surely can't they see that I must have one of them conditions. The GP did refer me to a rheumy and they ordered the bone scan! No money is definitely an issue but am just so desperate to get it sorted cos I want my life back.
Hi Shezaroo, I to had normal ESR and CRP results and my ultra sounds showed nothing TG no damage yet. Felt relieved and a fraud when they told me diagnosis was general arthralgia probably viral linked. As a throw away last resort they decided to do anti ccp blood test which would confirm that I didn't have RA. Given an appointment for a month and told needn't come back if all ok. Needless to say it wasn't and I was going back to demand referral to orthopaedics or anyone for an answer. Turned out the anti ccp was mighty high. Gave me a steroid injection which kicked in after 2 days and wore off on day 6. Also started me on medication. Nearly on 8th week of treatment and all settling down nicely. Caught early thanks to a GP who didn't waste time but gave quick referral to early arthritis clinic.
Apart from the bone scan, have you had any scans that have shown specific synovitis in any joints?
Also what joints did the bone scan show as inflamed?
Hi fruitycake23, I have only had bone scan no other scans. Did have xrays wich showed nothing, the bone scan showed severe inflammation in both sacroilliac joints though one side was worse than other and mild inflammation in wrists.
Just chiming in here. I am in no way diminishing your symptoms. I have seropositive ra and pain, but my crp is yet to be elevated. Different people are just different that way. I even had a rheumatoid nodule in my thumb and normal inflamation markers, go figure. So you could very well have ra and normal range numbers. I think it is worth the time to find a real good rheumatologist to run all the tests. It is important I think to treat the patient and not the lab tests. Diseases like Lupus, polymyalgia rheumatica, lymes disease, ect. can also mimic ra, so that might be worth looking into. My grandma was hospitalized with polymyalgia before the doctors figured it out. It is not normal to be in pain all the time. Anyway I would keep at it until some solution is found. All the usual disclaimers, I am not a doctor, nor is this an attempt to treat or diagnose.
My Notes Reveal Palindromic Rheumatism
The continuing debate about CRP and ESR, my experience...so far.
Sero negative
late diagnosis-too old?
So far not so good
