First appointment

Hello everyone....I have had my first appointment today and I've been tested positive for rf and ccp, the doctor said that I have the antibodies but not the swelling so I haven't got rhumatoid arthritis yet but it will develop it at some stage. Apparently I won't start on any medication until I have swelling. I've been told to carry on taking naproxen and ozerpazole and have been referred to a physiotherapy for my shoulder.

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  • I assume you have pain, if they ordered those tests. Something is causing that pain. I would seek a second opinion. Don't wait until your joints are irreversibly damaged.

  • The pain has travelled throughout all my joints over the last 3 months, the naproxen helps in most of my joints apart from my right arm and wrist. I've had more blood tests today, she says they would do a scan if my inflammation markers have raised.

  • It does seem odd not to start treatment until there is swelling. I've never really had swelling, just miserable pain and other symptoms. Not everyone gets swelling and there are a few inflammatory diseases which all benefit from Dmard treatment etc.

  • Is swelling how they usually define the onset of RA? I was diagnosed with "early non-erosive RA" but had not experienced any swelling whatsoever other than a 12 hour swelling of one knee six months earlier which I hadn't even connected with the wrist problem which caused me to seek medical advice. My rheumatologist based his diagnosis on positive RF an anti-CCP alone and recommended immediate treatment.

  • Don't want to sound bossy (but I will!)......get a referral from your GP to a rheumatologist ASAP.

    For some reason some GPS think they can deal with RD......some may be able to but most can't.

    The sooner a specialist gets to grips with whatever's the problem the better your long term prognosis will be.

    I've had RD for17 years& have very little joint damage because I was started on the correct drugs as early as possible. It can be a wretched disease if it's allowed to gallop away at the beginning.

    Hope you find a nice kind Rheumy!

  • It was a rheumatologist that I saw yesterday, she said my results were positive for rf and ccp and will develop ra in the future but I haven't got it yet. She said I've got osteoarthritis in my fingers and my toes. She examined me all over and because I don't have any swelling they don't treat until then

  • Try to keep on top of it then......and as soon as your symptoms change get an appoinment to get another opinion....try to go to a different Rheumy!

    I have found you have to be very proactive. It's not easy disagreeing with medics....but your the one with the pain!

  • And presumably you don't have raised inflammatory markers either? Osteoarthritis in fingers and toes can be a secondary effect of inflammation so the decision not to treat you gets stranger and stranger! I hope you will be monitored very closely from now on, as the opportunity to treat it early is very important.

    In the meantime do try all the self help approaches (stop smoking, maintain a healthy weight, take daily exercise, sleep properly and eat a good diet) and maybe it will never get worse.

  • It would be great to later read that she was able to stop it from getting worse by not smoking, maintaining a healthy weight, exercising daily etc...As I was a professional athlete who never smoked, ate well, slept well and didn't have huge amounts of stress in my life and still got RA.

    Without a doubt everyone should maintain all the self-help approaches possible and if nothing else you'll feel better overall anyway. I only say this to reiterate what you already said and that is the opportunity to treat it early is the most important point here.

  • I agree that early treatment is key.

    And yes, not at all fair to get a chronic disease when you do all the right things. However it distresses me that people who aren't able to follow that sort of lifestyle aren't supported enough to tackle the basics, which could help a lot in physical and mental wellbeing. It's not just about drugs.

    RA is tough enough, and sitting on a sofa smoking and eating cream cakes is unlikely to help. Even tiny steps can be of benefit, as it's not easy to change when you're in pain. For me the big difference lifestyle changes made is being able to tolerate the meds easily - and I take a lot.

  • I agree with you. I just don't know a lot of people who sit around eating bon bons smoking all day.

    What I do see a lot on these forums are newly diagnosed hard working mothers and fathers too scared to try any of the drugs or better yet not able to qualify to get them.

    They often wait a long time to get the courage up to swallow the first pill or god forbid take a Biologic all the while hoping and praying that cutting out dairy will keep their RA at bay. I really hope for them it will but if it doesn't and they have an aggressive, erosive type of RA the irreversible damage it can cause is awful.

    I am in the camp of doing both. Keep a clean lifestyle and even try cutting out all the foods advised from others on here to see if in doing so I can one day go drug free.

    My concern on this thread was that Adalisone has biomarkers and clinical signs that somethings going on and yet is just being monitored and must wait for swelling to appear before they start treating her. I never had swelling. My hope was that researchers were at a point where the biomarkers mattered enough to warrant a more thorough investigation. I also had hoped that if they found biomarkers to indicate possible future RA the protocol wasn't to just sit and wait until it develops in the future.

  • That is exactly what has happened to me, she has told me I haven't got it yet but I will get it eventually because of my ccp levels. I work full time and look after my family and keep a very healthy diet and walk everyday. She has offered me a trial that they have been doing for some time, to see if it's beneficial to people with early symptoms. The nurse or myself won't know what meds I have or if any at all.

  • Morning, ...Have been reading posts (from the state's) I had physical therapy this Sumer and what a difference. I also have shouldering but j figure I have to keep moving. Gentle exercise works for my RA.

  • I was diagnosed with a positive anti CCP but had no discernible swelling and both inflammatory markers ( CRP and ESR) were normal. I had morning stiffness in both my feet and hands for more than an hour with very little strength to hold things or open a water bottle. Was your anti CCP a high positive? Make sure to get a copy of all of your lab work.

    I'm not sure how bad you are feeling but one thing I can't quite wrap my head around is this:

    Studies show that anti CCP can show up years before RA clinically appears. So now they are doing all of this research to find a way to test people with family history of RA so they can treat it before the horse leaves the stable and becomes full blown RA, which is harder to treat, but now I hear that you actually have some clinical signs i.e., pain but this isn't enough to warrant treatment? Many of us don't get swelling or have elevated CRP or ESR.

    I would ask your Rheumatologist why they are doing research to find ways of spotting very early RA if they are not then treating it so it doesn't become full blown RA? Perhaps, this is the protocol for someone like you but early aggressive treatment for those who test positive for anti CCP seems to be the norm. However, RA is diagnosed clinically and you must not fit the criteria of clinical disease yet which is a good thing I guess.

    It is my understanding that naproxen does not stop the progression of RA and I'm guessing that neither does ozerpazole. Either way, I strongly suggest asking another Rheumatologist what the protocol is for treating early signs of RA so it doesn't progress to full blown RA. I don't know what the percentage is of those who test positive for anti CCP and then go on to develop full RA but if I were you I would find out.

    Perhaps you are golden and won't go on to develop RA but all of the research I did concerning anti CCP would lead me to strongly suggest you to ask a few more questions. But, hey, don't worry as catching it as early as you are is very encouraging and the chances of you managing it and carrying on well is really really good!

  • New research shows that you actually have RF or CCP antibodies several years before you have any symptoms that would classify you having RA. New research also verify that you can in many cases halt the progression in to RA by dietary modifications. This usually means eliminating gluten, dairy and suger. It means that following these antibodies in your blood you can actually see the effect of your diet. New research tell us that biomarkers have the potential to 1. Enable diagnosis before the onset of symptoms.2. Predict specific organ involvement.3. Predict flares.4. Identify meaningful disease subsets.5. Predict and monitor responses to therapy.6. Describe tissue and organ damage. ( " The autoimmune Fix", Tom O'Bryon).

  • Hi Simba,

    Are RF and anti CCP the biomarkers that you say have the potential to predict and monitor responses to therapy? I don't call into question that anti CCP can show up years before full blown RA but all the scientific research that I've read states that anti CCP can lower a little with therapy but usually hovers around the same number even with treatment and once you are positive for anti CCP you stay positive.

    These are diagnostic markers and not used to monitor the disease and doesn't indicate the severity of disease activity.

  • Yes this is what modern science states. In RA these biomarkers can be seen up to14 years before the disease reaches the degree of tissue damage and diagnostic symptoms. Their predictive value is for RF 52-88% while for CCP as high as 97% that the disease may break out within 14 years. CCP will not be lowered with symptom oriented therapy, you need to be able to understand the root cause that has triggered the inflammatory process. In RA one of the main players is more often than not the dyfunctional gut. So in order for the therapy to have effect on the biomarkers you need to address what triggers the inflammation.

  • Thank you all for your reponse to my post, I feel very confused at the moment. I do keep myself really healthy with my diet, I don't smoke and I walk 3 miles everyday with my dogs which I don't get any pain from. since I've been taking naproxen it has made a huge difference to the pain, I still get it in my hands and right arm in the mornings. When I saw the rhumy yesterday the pain had started to ease so when she checked me over it was just my fingers that hurt and my shoulder. She had offered me a trial that they are doing but that's it, and to just keep taking the naproxen. I guess I will have to pay attention to my joints for swelling and go from there. She did say that it the inflammation markers come back raised she will send me for an X-ray xx

  • I would recommend for you to leave out gluten, dairy and suger for three weeks. You may be amazed by the effect it has on pain. I was in exactly. the same situation a year before my RA was a fact and my symptoms had increased considerably. Like you I took Naproxen an felt fine, until it didn't work anymore. I became aware of the dietary treatment possibility when my RA symptoms were already quite bad but still insisted to try it before trying the hard meds. After 3 months on AIP diet 80% of my symptoms were gone and inflammation markers were down. I often wonder how it would have been if I had started the diet when my symptoms were still mild and inlammation markers low. You can only win when trying to elimminate possible inflammation triggers from your diet:). Take care.

  • The diet change is the next thing that I'm going to try, I've been doing a little research, it all seems like a minefield at the moment though. I am also seriously considering the trial because at least this time way I will have regular scans and blood tests. Thank you xx

  • I felt the same when I was diagnosed. I have never smoked, drank only a little, had a healthy, vegetarian diet for nearly 30 years, wasn't overweight and had a pretty stress-free life. To my knowledge, it didn't run in the family either. But recently I have found from my aunts that genetically, it ran in both sides of the family before my time. In my case, symptoms started soon after a horribly stressful few months while we cared for my Mum while she was dying. I think if it hadn't been for that trauma, I might have escaped it. On the other hand, I may well have developed it at a much younger age if I hadn't been careful about my diet etc.

    The rheumatologist sent me for x-rays at the same time as my initial blood tests. You would think there would be a standard practice they all followed!

  • Everybody seems to be having different treatment don't they. The hospital have offered me a trial so I may do that just so that I have regular scans and blood tests, so if swelling does occur I will knoe straight away.

  • that is the reason I signed up for the MARs study all to do with new diagnosis and compatability with Methotrexate.

    Probably peoples differing experiences is to do with whether you are being treated by a large research orientated department or a local general hospital that doesn't specialise. Probably the luck of the draw.

    (not saying that some local general hospitals don't give good service, I think it depends on how up to date your consultant is with new research etc.)

    Lots of 'I think's in that input! Hope you know what I mean?

  • nice.org.uk/guidance/cg79

    This is the guidance that all consultants, doctors,nurses etc should follow! :)

  • Thank you for posting this information. It is very interesting and I shall have to keep the link for future reference.

  • Hi Adalisone.

    I think this is a very puzzling situation too.

    Some rheumys include 'early aggressive treatment of rheumatoid arthritis' in their list of special interests on their profiles. I suspect that might be the type of rheumatologist you need. The fact that they list it at all suggests that not all rheumys take the same approach. In your shoes I'd be very tempted to go for a second opinion. That does mean waiting for a referral to another rheumy but personally I can't see what you've got to lose (apart from the physical therapy but you might be able to stay with the current hospital while waiting to change.)

    And yes, it's so positive that you have a healthy lifestyle. I don't think anyone was suggesting that healthy living cures RA or that the opposite causes it, just that 'every little helps' and oh boy it so does ..... I now consider exercise (at whatever level) to be almost as vital to me as the meds, but no, not as an alternative to them.

  • Hi Adalisone,

    You seem to be in a similar situation as me. I have a high RF but normal ccp. Symptoms include pain in my fingers, wrists, shoulders, hips, ankles, elbows, back and neck. I was diagnosed with clinical depression and anxiety earlier this year. This just didn't sit well with me and so knowing that RA encompasses these conditions makes more sense of what's been happening. I've had a major back spasm that put me out of action for weeks and get claw like hand seizures. This "flare" doesn't seem to be relenting having started about 6 weeks ago. I too am taking Naproxen. When my scan revealed no joint damage my Rheumy said that we were ok to wait until I get any swelling before I start on the meds. Having read this thread I am feeling less secure about that decision. I am having a scan on both my shoulders for bursitis on Thursday next week and a follow up for the results with my rheumy on Friday. I will be discussing the possibility of starting treatment sooner rather than waiting. The Naproxen is not helping as much as it was. Please let me know how you are doing as we seem to be following a similar course. Good luck x

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