Early RA or something else?

Hi all,

I'm positive for anti-ccp, have morning stiffness, have swallowing in my hand every morning and I had sever pain in 7 semetrical joints. My GP diagnosed me with high probability to RA. However, the rheumatologist finds it very unlikely. His reason being that the x-rays of my hands and feet show no damage and he couldn't see any significant swallowing in my joints. I've been taking 1600mg of ibuprofen every day for a month and finally I can feel improvement in my symptomes. I had MRI scans today and I'm not sure how sensitive it is. From one hand I really hope it's all clear, but, on the other hand I feel there's something seriously wrong and has been for the last 5 months and all I had so far are lots of miss diagnoses and perhaps finally a right one that the rheumatologist is now dismissing since I don't have any serious damage in my joints.

With all what I've been reading about the disease, I unfortunately think this is the only fit explanation to what I've been experiencing in the last few months. And the positive anti-ccp and pain in multiple joints is "all" I have, and it's not convincing enough for my doctor. I would be happy to hear from you if you encounter something similar or if you have any knowledge of other similar diseases with similar symptoms and positive anti-ccp. From what I've read, positive anti-cop means there's 99% risk of having RA...

Skip

Featured Content

HealthUnlocked User Stories

How did you improve your fitness, general well-being or cope with your illness?

Share your story

Featured by HealthUnlocked

35 Replies

oldestnewest
  • I would get a second opinion from another rheumatologist. I have not been diagnosed with RA, but am also anti-CCP positive and have a rheumatologist following me. I have normal inflammatory markers and very little and infrequent joint pain. No stiffness. the Anti CCP marker was kind of discovered accidentally, but now I'm being watched. We even talked about starting plaquenil as a possible way to delay onset of RA. You have anti CCP and symmetrical pain. You may want another opinion just for peace of mind.

  • Hi, I'm no Dr but I'm negative for the Rheumatoid factor and due to that I was given the CCP test and that was positive. My Rheumatologist told me due to that I definitely have RA and now a few years on its pretty much under control!! Sorry for the quick response, I'm off to work!

    Good luck.

  • If RA hasn't broken out yet it will as you said with a 97-99% probability. I was exactly in the same situation and had I known what I know today about diet and the microbiome I would have done all I could to support my immune system that evidently was in trouble, and perhaps could have slowed down or arrested the pathological process, before going to toxic meds. It is however true that the meds seem to have the best effect as this point even though after a couple of years there is no difference with early and late med starters.

    Funny that doctors still send newly diagnosed patiens for x-rays well knowing they are not accurate enough at this point of time. I think in the US and many other countries MRI is used for early assessment routinely.

  • Were you taking the ibuprofen when you were x-rayed? If it was being effective it might well have damped down the inflammation so much that the rheumy couldn't feel swelling and it wasn't detected on X-rays as they're not that sensitive for soft tissue and much better at showing erosions. And the fact that you have yet to have any damage (erosions) is good news, but also no reason for the rheumy to say you don't have the disease at all!

    MRI is much more sensitive, but again if you are stuffed with anti-inflammatories that might give a skewed result.

    I'm anti-CCP positive and had no permanent damage when diagnosed, just pain & swelling. But that didn't stop me getting a diagnosis and treatment. So go see another rheumy!

  • Have understood that MRI can detect minimal RA changes that yet cannot be seen on x-rays The taking of anti- inflammatories can have an effect on the extent of inflammation detected but not on these changes in the joint. Or perhaps I have got it wrong?

  • I agree with you that MRI can detect very small changes if the radiographer is skilled, but it does sound as if Shila37 might be at such an early stage so there might not be any joint changes to see?

    I just wish that rheumies were all equipped with ultrasound machines. My new rheumy has one next to her desk, and checked me over in minutes so she could easily see the joints with synovitis.

  • I was diagnosed without pain, swelling, stiffness or any of the usual symptoms in January. X rays showed no damage. I had had random, non-symmetrical pain over the previous few months which had completely gone by the time I saw a rheumatologist (change of diet etc). All I had was tendonitis in one shoulder and positive anti-CCP and RF. That was enough to be given a diagnosis of RA and be given DMARDs immediately. Supposedly, the earlier you begin treatment, the less likely you are to suffer permanent damage. So I wouldn't leave it until it until damage starts occurring if I were you. The sooner you know what it is, the sooner you can begin to address it.

  • Did I understand correctly that you had with diet decreased the inflammation? What were your inflammation markers when you saw the doctor? You had RF and CCP antibodies and tendonitis were these the only criteria that the doc made his diagnosis on?

  • Well, I had had a very hot and painful left wrist over the previous few months (since my father's hospitalisation and death a few day's later), and before that random aches which moved about from day to day. In late August, just before I saw my GP I started to experience excruciating pain which really scared me as I realised that something was seriously wrong with me. They gave me Naproxen, which took the edge off the pain. But then I started to wheeze and had to stop taking it. At the time I was still waiting for the GPs to do proper tests and decided I needed to do something myself rather than relying on drugs. So I turned to juicing and an elimination diet!

    By the time my GPs managed to order the RF test, I was free of all aches and pains for the first time in a year. (But the diet wasn't easy and the juicing was taking up to an hour and a half every day.) The RF test came back positive (61) and I was referred and had an appointment with a rheumatologist within 5 weeks.

    I was able to reintroduce most of my usual foods back into my diet over a few weeks, but the night I reintroduced deep pan pizza loaded with cheese, I was in intense pain with my right shoulder and I really thought I was dying of pleurisy as every breath hurt. After a sleepless night, the GP diagnosed it as a "viral lung infection". But a few weeks later when, still in pain with my shoulder, I handed my diary over to the rheumatologist he said straight away "You've got tendonitis in that shoulder. I can fix that". And he did, with a steroid injection into the shoulder.

    At that point, the only evidence he had was the positive RF as the GPs hadn't done any other tests. And he said that wasn't sufficient in itself to diagnose RA as I had no other signs or symptoms and what I'd described was something called "palindromic rheumatism". While I was there I had the full range of rheumatology blood tests, and liver and kidney function tests and x-rays. The next time I saw him he said my anti-CCP was strongly positive (297) and on that basis changed his diagnosis to "early non-erosive RA" and started me on Hydroxychloroquine. I have no reason to suspect my inflammatory markers were outside the normal range. I had no discernible inflammation at the time and even when I do have, my markers are usually within the normal range. (Both ESR and CRP rose when I started taking SSZ though.)

    So, yes, the juicing, diet and supplements relieved the inflammation more effectively than the Naproxen without the side effects. I'm hoping with the Hydroxy, Sulfasalazine, LDN, supplements and careful eating to stave off the development of full-blown RA. I haven't experienced any stiffness, and don't take any pain killers, but the achiness gets to me.

  • Good for you😊 Listning to the reactions in your own body is essential in every treatment path. I can just imagine how hard juicing must be. For me the AIP diet has worked very well and once you get used to it there actually is a lot of nice recepies and food variations. Good luck and let us hear how it goes:)

  • The main problem with the juicing was that I had a masticating juicer which produces very high quality juice with little waste, but is very labour-intensive as far as chopping and cleaning goes.

    Although I don't follow the Paddison Programme, I did follow Clint's recommendation and bought a Philips Avance centrifugal juicer. The juice quality and quantity is less, but it takes a matter of minutes to produce a litre or so of juice and is much easier to clean. As I find I can juice and drink a wider range of fruit and veg than I would eat juicing widens my range.

    The elimination diet was useful in that it clarified certain things that my body had been trying to tell me for a long time. The most shocking discovery was that wheat caused my heart rate to increase uncomfortably which in turn provoked feelings of anxiety - things I'd put down to hormones and stress. Also, a minor cough that had plagued me most of my life disappeared when I stopped eating all dairy.

    Some of those AIP recipes look delicious. As a vegetarian (or now pescatarian), I couldn't embrace the whole protocol though.

  • There are masticating juicers that have large feed chute that can take whole fruits, that should not really stress you. But if you getting frustrated from the work you put in chopping the fruits before juicing in a masticating juicer, I would recommend a centrifugal juicer to you.

    And here is what I found, juicergenius.com/best-centr... ... But the point to take into account user's review and expert reviews before making a decision.

    Hope this helps

  • Thank you all for your answers! It really helped! You made me feel less crazy. With everyone around me just saying I should be happy it's not RA and leave it with that. I really appreciate your recommendations regarding a second opinion. And I'll definitely do that.

  • Hi ya, I'm in the same boat as you, I've tested positive for rf and anti ccp, my rheumatologist said I have the antibodies for rheumatoid arthritis and will likely develop it but at the moment I haven't got it because I have no swelling. With out pain meds from the doctors I'm very uncomfortable During the morning, my feet, hands, fingers and wrists. It eases off during the afternoon and then comes back at night.

  • Hi I am getting exactly the same symptoms as you. All the time I keep moving the pain isn't too bad, but once I sit down and rest in the evening, and during the night, the pain returns....

  • The rheumatologist said that if the MRI will be clear then he will diagnose it as pain caused by an unknown source. In the first appointment, before he saw that my blood tests showed no inflammation he said its most likely to be spinal arthritis. RA was never a real option in his opinion, since the pain and swallowing in my hands and feet were for only a short while and almost completely gone by the time I saw him. Also, my worst pain and the place it started is my pelvic. Other joints like knees, shoulders and elbows appeared later. And again, because there is only slight involvement of my hands and feet, they don't really consider RA. Honestly, I really hope he's right, I just want to be sure it's the right diagnosis...

  • Hi. I wonder if Palindromic Rheumatism is a possible dx if the MRI is clear? Severe inflammatory bouts of joint pain with no residual damage. Just a thought xxx

  • Looks like for PR the attacks lasts for days and not weeks or months like in my case. And for me it's not really jumping between different joints. The pelvic, shoulders and knees are always either painful or tender. And my hands are swollen every morning. And lastly the anti-ccp is positive. So I'm not really sure why the doctor even considers other types of RD.

    But, thanks for the suggestion. I would be happy to find other explanation for my symptoms than RA.

  • If you look on the PR Facebook group you will see that it doesn't have to flit from joint to joint, attacks can last indefinitely, anti CCP is generally positive.

  • I was exactly like you 4 years ago. Woke up one day with acute stiffness in my ankles and wrists but no real pain to speak of. Went to the doctor, got blood tests done and they said my RF was high and I had a positive anti-ccp, however, I never had a repeat of the symptoms but they put me on methotrexate straight away, whether it was my complete Change of diet or the early medication but whatever it was seemed to disappear. I was given the ok to stop the methotrexate (which was making me ill anyway) That was in Singapore, now I am back in the UK my Rheumatologist wasn't convinced I had RA but kept watching me and gradually problems started occurring but not the 'normal' sysmptoms. I get random acute joint pain in my shoulders, thumbs, fingers, elbows, jaw, and neck but never 2 joints on either side at the same time which is what they apparently look for. The pain comes on all of a sudden and is debilitating for 2-3 days most cases. I have noticed that certain foods make it worse. It is almost more like gout than RA but I am assured it is not gout. Also interestingly I went to one appointment and the RA nurse said it was Tendonitis and not RA, but when I went to the actual consultant he said the 2 can be related as you are more prone to Tendonitis if you have RA. The inconsistencies in the approaches from medical staff (although most are great) is what really gets me as if after all these years of research they still dont really know about all the other possible interactions or issues. It can be sole destroying sometimes.

  • Hi Celder

    your random acute attacks sound just like mine.And I have positive RF and CCp. I have a diagnosis of palindromic RD , and my consultant says that they're now finding it's just another form of 'regular' RD and treated the same way. The good thing is that joint damage is less of a problem at least unless 'classic' RA develops, which it often does. Cheerful!

    Don't blame your medics - I think the ideas on auto-immune diseases are genuinely changing rapidly, and that there is much more confusion about where one disease ends and another begins. At least it means that a lot of research is finally going on.

  • Could it be PsA? I have this and get tendonitis, and random acute pain in different joints every few days. However I am sero negative.

  • Hi

    Are you seeing a senior Rheumatologist? If not request to see the head of dept.

    I have a more unusual form of RA and my local hospital's Rheumatologist (junior) said there was nothing wrong with me. My wonderful GP became very annoyed and transferred me to a teaching hospital outside of my area where I was seen by the head of dept (ie lots of experience, seen it all) and within an hour said he was sure it was RA. Following blood tests etc etc it was confirmed.

  • Thanks all!!

    I saw my GP today and he was very surprised to hear they think it's not RA. But, he believes my doctor should be pretty good so I should trust whatever his diagnosis will end up being. He explained to me that they are very reluctant to diagnose RA and give the modifying drugs if they are not absolutely sure the patient can benefit from those. That makes sense to me.

    I'll see what my MRI scans and my doctor are saying on Monday and then I'll decide if I need to find someone else.

    I'll keep you all updated.

    Thanks again!

  • Just to update, I saw the rheumatologist today, as I thought the MRI is completely normal for my pelvic and back. They didn't test my knees or shoulders.

    I brought her pictures of my swollen hands from Thursday morning, and it's good thing I did since this morning they were completely normal. After I pressed her with questions about anti-ccp and if it's true I have 99% risk to develop RA, she finally said that's true and decided to schedule an ultrasound for me, but, only for my hands.

    She insisted over and over that the pain I have in my pelvic is not related to all the other pains I'm having. Is it me or is this crazy?.. saying that I might have RA and then saying the pelvic pain is not related because the MRI is clean...

    I also have tenderness in my jaws, which she paid no attention to. And the thing that makes me most angry is that now, after over a month of 1600mg of iboprofen daily, when it finally looks like the inflammation is almost gone, now they want to do the ultrasound to my hands, because the x-ray didn't show anything. But, it didn't show anything two weeks ago as well, when I told them my hands are swollen. Now they probably won't see anything in the ultrasound as well, and then they'll dismiss me and will tell me to forget about it until it comes back again, if it will come back again.

    It just looks like lunacy to me. Here you have a patient who is 99% likely to develop RA, and she comes with complaints that fit the symptoms of RA, what is the sense in sending me away and telling me to forget about it and go on with my life? I guess they don't understand the importance of having a name, a label to everything bad that goes on in the body.

    She kept telling me I need to follow up with my GP on my low hemoglobin, which she also claims is not related to the pain in the joints. I felt like she knew less than me about the disease.

    And to finish in a positive note, at least my pain and stiffness are almost gone and it looks like the more I'm doing normal things the less pain I have. So all in all I'm happy with the situation, especially since it happens suddenly. On Friday I could barely walk, my pelvic was so stiff and today I can walk normal and fast and almost run slowly. I was very active during the weekend, maybe it helped to release the stiffness some how. I'm not sure what caused the change, I'm just happy it's gone. I'm supposed to start reducing my medications today and I'm scared it will return and it will take weeks to get it under control again. Would be happy to hear from your experiences on reducing and stopping medications. Thanks!

  • Feels like the RA is bruing but hasn't come to the stage where It can be clinicly diagnosed. Have you thought about trying to calm the inflammation with diet? An anti-inflammatory diet may stall or even stop the progression into a fullblown disease. It's worth a try😊

  • Thanks. Yes, I changed my diet about a month ago and also started taking multivitamin and curcumin. I'm planing to keep with that and add some bi-weekly exercises to strengthen my muscles after all those month of no activity. I really hope it will help it to never come back.

  • Well it's good in some ways that MRI didn't show anything dreadful like irreversible joint damage, even tho' I can appreciate it's frustrating not getting a clear diagnosis. But if there are no obvious physical signs, all the docs can go on is probabilities. And RA does tend to attack smaller joints first and move to large joints only later, so it's not that common to have it start in the pelvis. And you wouldn't want them to prescribe strong drugs if you didn't need them so you're in a bit of a catch 22 sadly.

    But, fingers crossed that it was a bout of reactive arthritis, and if you look after yourself it will never come back again!

    When I've reduced things I've always done it very, very slowly so I can sense if I've reached a point where mustn't reduce further.

  • Thanks. I really hope it will never return and that I'm a weird 1% that had arthritis, but, not RA.

    This morning my hands are all swollen again.. maybe they will see something in the ultrasound. I guess I'll be more convinced this is not RA if they'll check my hands while they're swollen like that and will give a different reason.

    And I would expect from a serious doctor to at least recommend change of diet, curcumin intake and exercise for prevention...

  • Hi Shila36

    A doc is only going to recommend a change of diet if you have a bad diet. That said a lot of folk in the UK have a not so good diet.

    I am a food scientist and have eaten well for most of my life. And when I say well I don't mean like the average Jo. If there was a diet that works for us RA sufferers then we would all be giving it ago.

    Some might find some diet changes do help them - I say good luck to them - but the jury is still out on this one.

    At the end of the day eat well, but don't kid yourself you are eating well as a lot of average Jos do.

    There are lots of positives about with regards to Turmeric. I take it everyday. And have read tonnes on the subject. Is it working for me? I do not know as I do so many other things to try and stop the RA consuming me.

  • Perhaps this thing with diet changes should be looked at as not a question of eating "good" or " bad" but as a fact that certain foods ignite an inflammatory reaction in your body. Finding out what these foods are is the point. Tumeric, like so many other anti- inflammatory supplements may decrease inflammation but do not in any way alter the pathological ungoing process. Leaving out allergens, taking care of your microbiome in your gut does in fact have an effect on one of the important players in the autoimmune attack of your body.

  • When I talk about a good diet this is one of the things I am getting at. If you eat well and I repeat a lot of people do not. Then your gut is in balance too. Us foodies have known about the the damage we do to our guts for many years - it is nothing knew.

    With regards to triggers, I am no expert when it comes to the RA side of things. When I have attempted to delve into the biochemistry it gets very complicated indeed.

    In my opinion there are a number of triggers.

    In my case I know it is genetics and not what I do or don't eat. And so for me taking Turmeric and Omega 3 is about dampening down the RA.

  • I don't think a diet or even Turneric can help during a flare. But, when finally getting to remission or at least significant decrease in the inflammation, I believe Turmeric and anti inflammatory diet can help prolong the remission.

  • Well as I say I am no expert, just a mere food scientist. And in my humble opinion the additional things I do have had a significant impact on my RA. But I agree with you with regards to when the disease becomes active (flare).

    I don't know that the things we do can prolong a remission period.

    The jury is out on why our immune systems 'go wild', the jury is out on the triggers, the jury is out on many things so I say try what you can if it is safe and good on those that find something that helps them. For me it's:

    swimming

    aqua aerobics

    turmeric

    omega 3

    seeing the glass half full not half empty

  • Thanks for the good recommendations. I think the jury is out on many things since this disease is very individual, both for what makes it active and inactive. I guess it's all about listening to our bodies and trying to give it what it needs. With the assurance of medications of course, when it's out of control.

    And I think that for all of us it's genetic, if we know from who we inherited it from and if we don't :-)

    So everything you do matters :-)

You may also like...