Might I NOT have RA?

Hello everyone. I can see there there are many very knowledgeable RA sufferers on this website and I would be really grateful for anyone's thougts on my story below. I'm probably just in the Denial phase right now, but I do seem to be coming at this from a different perspective to some of you (many of you aren't getting the diagnosis you think exists, but I don't want the diagnosis I have been given !).

I gave birth 15 weeks ago. I had a very healthy pregnancy. I am a very healthy and fit person and I even carried on going to aerobics / yoga etc right through to 37 weeks. Giving birth did not go so well, however. Induction led onto emergency cAesarian due to fetal distress, followed a couple of weeks later by an infection in the c section wound leading to the wound busting open.

6 weeks after birth my hands and feet started to ache. Balls of feet and pads of palms. Initially I put it down to starting exercise too soon after birth. But when things did not improve, I went to see a GP at 8 weeks post birth. I had stiffness every morning which would gradually ease out to a general bruised feeling, and stiffness would set back in again in the evenings after I had sat down. It was difficult looking after baby because it was painful to lift him and walk down stairs.

GP carried out a blood test and squeezed my hands and feet in certain places and asked if it hurt. It didn't hurt where he squeezed. Blood tests all came back normal. All inflammatory markers were normal. I had no other symptoms other than the stiff hands and feet. No tiredness. No feeling unwell.

I insisted something was wrong and because my thyroid has been playing up since giving birth (historically I was mildly hypo thyroid and readings have swung hyper thryroid since giving birth), I personally suspected that I either had post partum thyroiditis or post pregnancy hormones were in a state of flux, I asked to be referred to an endocrinologist. GP refused and said if anything I should first see a rheumatologist to rule that out, so he would refer me. He said NHS waiting list was 16 / 17 weeks so I should take ibuprofen until then.

I went private and got an appt within a week. The rheumatologist ordered further blood tests and ultrasound. The ultrasound showed no inflammation or damage to the joints. I only had inflammation in the tendon sheaths which the radiographer said often happened with rsi injuries. The blood result however was another matter. They came back as strongly positive for both rheumatoid factor and anti ccp. The rheumatologist also got me to squeeze a rubber ball attached to a pressure gauge to see what my squeeze strength was, which he said was pathetic. So he has concluded that I might have the very beginnings of ra and that we should begin treatment immediately, within the "window of opportunity". I am currently 9 weeks post beginnings of the pain (never had any joint / tendon pain before). So I took my first dose of 10mg methotrexate last night (no side effects so far by the way). The plan is to increase the meth dose every two weeks and see him again in 12 weeks, this time back on the Nhs.

At my appt, I said to the rheumatologist, look, I am super fit and healthy, my family has great genes, no-one ever feels I'll. I don't feel ill. I only have sore hands and feet. Is it possible that this is just some form of temporary reactive arthritis caused by the birth, pregnancy, the infection in my c section wound post birth etc. He smiled, sat back in his chair and said "I cannot ignore these blood test results, I'd be failing you if I did, so my advice has to be to start methotrexate". I understand why he said what he said, and I accept the sense in taking a conservative approach, but he didn't answer my question, I now realise.

It's difficult for me to carry out much research whilst home on maternity leave with a 15 week old baby. Thoughts I have are:

- if anti ccp and rf are positive, is it still possible that it could be something else, or is that really conclusive?

- could post pregnancy hormone fluctuations be mimicking these ra results. I have seen thousands of posts on the Internet by women post pregnancy who got sore hands and feet for several months after giving birth, and then after 6-9 months the pain wore off. Loads of people are saying this to me, even one of the GPs.

- could it still be a temporary reactive arthritis triggered by the c section infection, even though the rf and anti ccp are positive.

I feel so well. Even with a 15 week old baby I don't feel tired. I find it very difficult right now to accept this potential diagnosis given how I feel and given my family history.

Sorry for the long post. I'd be grateful for any random thoughts.

18 Replies

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  • congratulations on the birth of your child and its good to know you feel so well ,This condition has over 200 types ,and we are all different the blood test can tell the doctors most of what they need to know , you could ask for a further blood test, I wish you well .

  • Hi there

    Firstly congratulations on your new baby, sorry to hear you are having such a worrying time about your health. This is a really difficult situation for you, it's always so scary not knowing if the diagnosis is correct or not. But the fact you have been positive for rheumatoid factor and anti-ccp does unfortunately point towards RA, your Rheumatologist is the expert here and you really need to be guided by his opinion.

    If it is RA try to think positive that you are on treatment really early and your outcome will be very good.

    I had symptoms very similar to yours 15 years ago, it took over a year to diagnose, as the blood tests were not clear and as a result I ended up in a wheelchair with extensive joint damage. Wish the anti-ccp test was available then.

    I wish you all the very best, there is a huge amount of support on this forum for you as well as ringing the NRAS helpline who have been invaluable to me over the years.

  • It sounds like you had a good rheumy as I agree that he/she would not have been doing a professional job to ignore the blood results entirely. However, of course it's possible you don't have RA as none of these things are 100% accurate - but do be careful what you wish for as there are many worse things than this. The RF test is pretty unreliable, but the anti-CCP is better - I think it's about 75% sensitive (ie identifies 75 out of 100 people with the disease) and more importantly really is over 90% specific (ie excludes 90 out of 100 people who don't have the disease). So of course there's a chance, but is it one you want to risk?

    RA is a very variable disease and can show itself in hugely different ways in different people, so don't place too much reliance on other people's stories of how the disease started for them. However, if you talk to people with RA a lot of us wish that we had been diagnosed sooner and put on the meds within the window of opportunity as research shows that really gives the best outcomes and greatest chance to get into an early remission and maybe even be able to stay in remission without drugs. So don't rule this all out - the docs wouldn't prescribe these meds if they weren't sure. And even reactive arthritis does better with treatment.

    I took the meds for a couple of years and was doing very well so asked to reduce them just to check I still needed them - and I did! So just because you start taking them doesn't mean you can't choose to do things differently later.

    Oh, and there's absolutely no RA in my family as far back as we know. And I have no significant side effects from the drugs which have been brilliant for me. And I was pretty fit - just older than you.

  • Thanks everyone. I really appreciate any thoughts at all. I will of course follow my rheumy's recommendations, and I'm now very glad that I was pushy with the GPs, and then decided to access my private medical insurance to facilitate a rapid referral to a rheumy (even tho the pmi has only covered about half the cost of all the blood tests and ultrasound). Becaus it means that if this really is ra then I'm on the meth treatment within this 12 week window people talk about.

    It was just that I don't Feel ill, whereas a lot of other people seem to ....

    One other question. Ive had an injection in the bum to take away the pain whilst the methotrexate kicks in. That was great. Immediate removal of inflammation pain on Thursday.

    But I'm a bit confused by the latest thinking on the best way forward. As I understand it, the view now is to go in hard and aggressive as early as possible, and ideally within the "window of opportunity" in order to have the best chance of achieving early remission.

    But some sites I read say that this should involve a combination of methotrexate and a biological. But it seems that on the Nhs biologicals are not authorised until you have reached a more severe level of ra, so could never be given within the window of opportunity. Is that right?

    Helix, are you functioning normally in life?

  • Yup, I'm "normal" - or at least 95% so. I have a fuzzy morning post MTX injection, and have to take care to eat healthily, sleep well and exercise. But apart from the odd (fairly rare) flare then I'm fine. I have some damage to my feet that happened before I started on the drugs, so can't walk more than about 5 miles without a break. But the age related osteoarthritis in my knees & spine generally causes me more grief than the RA.

    I'm on the triple therapy of MYX, Hydroxy & Sulpha and research seems to show this is as effective as the MTX/biologic mix. Which seems true to me as I've been on it for years with no problems. I'm not hugely keen to move to biologics anyway, as I live in the back of beyond most of the time and the risk of infection is worrisome when you are a long way away from anywhere and spend a lot of time outdoors getting cuts & scrapes.

    Most people tell me that I look healthier than I've done for years, and I'm certainly a calmer more relaxed person than pre-diagnosis. One positive thing about RA is that it gave me a boot up the bum to focus on the important things in life, and let unnecessary stuff go - so not all entirely bad.

  • Oh, and you're not ill. You just may have a disease, which isn't quite the same.

  • when I was first told that I had RA, I was going to the gym 4/5 times a week also swimming a lot. I when to my GP with one knuckle on a finger that I had banged on a door knob two weeks earlier but it was still sore and swollen, I was sent to the hospital 6 weeks later to be told that I have RA, it was a total shock! unfortunately for me they didn't hit it hard to start with so that I have damaged joints. Now after listening to a rhummy at a NRAS meeting, if they catch it quick and start treatment right away they can sometimes stop the damage before it really sets in.

  • Right, ok, I'm not ill, I may just have a disease. Which I can hopefully cope with as it's been caught really early. I may use that one when I call my parents tonight to report on the results. Thanks. All a bit mind boggling to get my head around.

    Thanks ozzy too.

    Off to feed baby again now....

  • Are there any instructions about breastfeeding and the meds you're taking? Just a thought and a couple of assumptions! But your rheumy sounds really good. Apparently if they treat your disease aggressively at this point you could find that it beats a retreat. I think most of us on here would wish we were in that situation. So I really hope that they've caught it early and that you can enjoy your time with your baby without worries about joints and pain.

    C

  • Thanks cathie. Yes, I appreciate that the situation I seem to be in is one that many of you would have hoped for yourself, so I have to be grateful for that. Not breastfeeding fortunately. Birth was a bit traumatic. Methotrexate wouldn't be compatible with breastfeeding.

    Seems a shame though that Nhs waiting lists are so long, as it seems to remove the chance for anyone in the uk using Nhs treatment to fit into that window ....

    My rheumy's swears by his squeeze ball, which he says he has used since the 1970s. He says a lot of rheumies don't use them any more, but that it has helped him with diagnoses many times where there is confusing data in blood work and prima facie examination: he says it tells him when to investigate further, notwithstanding initial evidence. I'm in west dorset.

  • I tend to go by the mantra 'fear the disease, not the drugs'. But I have to say I can see where you're coming from. It's a very difficult situation to get your head around. In retrospect I can see that my Psoriatic Arthritis came on very slowly - I was 56 when I was diagnosed but had symptoms on and off for many years before that. The thing that led to diagnosis (and which made me very grateful for, and accepting of, diagnosis) was a complete physical collapse. I'm really not sure what I'd have done if I'd been diagnosed while feeling very well in myself.

    Whatever you decide it would be as well to try to monitor yourself as objectively as you can. Sometimes significant symptoms are slippery and easily dismissed. I think it's great that you see yourself as a strong and healthy person - that mental attitude is good whether you have a chronic disease or not - but at the same time it might be worth looking back and trying to recall whether you've had episodes of joint pain, joint problems or intermittent stiffness. Nobody really relishes that kind of self-examination but it would be good to build up as clear and full a picture as possible over time. The main reason for doing so is that prompt treatment can indeed give the best chance of remission.

  • Thank you postle. I think part of my problem is not just that I think i am strong and healthy, but that I am invincible. I have so far sailed through life like the QE2 across the Atlantic, and nothing stands in my way :-/

    I'll think about the aches. Certainly no stiffness but as a gym bunny there are inevitable occasional aches.

    It's really good to find a forum like this though. Emotional melt down followed Thursday for two days, but then I realised I had a baby to take care of .... This forum helps to try and put some perspective on things.

  • It just seems that go to your doctor with random pains you are referred to rheumatologist and low and behold you are diagnosed with RA and put on Methotrexate - trouble is once you are labeled with RA (at least in my experience) it is very hard, nigh impossible, to get anyone to look at other possible diagnosis. Once on these RA drugs the side effects are often worse than the actually disease and the spin off of other issues due to the drugs are worse than the pain from RA. More research is needed!!!!!!

  • Hiya Libluce8. But how else could whatever you when to the GP for be determined? You went to your GP with a problem, he performed blood tests to confirm or rule out what he suspects. If they record inflammation then prompt imaging & examination by a Specialist in the field is imperative to determine what is causing the symptoms in order to get an early diagnosis & treatment to prevent further erosion & other life threatening conditions associated with untreated autoimmunity. Or at least rule out the disease which left undiagnosed can cause very real, life altering problems. The GP is as least doing his job properly, determining if he can treat a problem &, if not, referring his patient to someone who can.

    Are you not convinced you have a rheumatoid disease, your reply reads as though you don't? I don't know but would guess you were diagnosed as sero negative which I understand is less cut & dried as far as a specific diagnosis is concerned. In my experience of nearly 4 years of MTX it has improved my life ten fold. It's well recorded as the gold standard treatment for RD & if it hasn't worked well for you or you're suffering side effects, even on max dose folic acid, then maybe it isn't the med for you & a change in DMARD is necessary. Autoimmune problems come in many forms & unfortunately it can take a few tries to fiind the right combination of meds to achieve control. Your Rheumy will be more than happy to discuss options with you, after all his aim is to treat all his patients according to severity with as few side effects as possible to prevent further erosion, even achieve remission. If you feel you've been misdiagnosed I'd go back to your GP & see what he considers should be your next plan of action.

    I hope you get the answers you're looking for but think you'll find if you came of all your meds your reply may have read very differently. ;)

  • congrats on baby . I was lucky enough to receive excellent quick diagnosis .....my fingers on right hand swelled up overnight but i had been unwell for months but dr couldnt find anything other than my asthma andhigh liver counts. After finger swelled i saw another duty gp who refere me to rheumy who i saw in two weeks. The high liver count was down to all the inflamation in my body. I had two stroid injections and xrays which showed someerosiin in my feet i couldnt start on mesds until count lowered. Im now on sulphasalazine naproxin and paracetomol every four hours. It is still painful and im seeing rheumy next month for review. The worst for me is the fatigue its like no other tiredness ive ever had. When im having a flare up its awful i have to go to bed often sleeping ten more hours a day. The impact on life i still work full time but looking to reduce hours over winter as i suffer badly with my chest as well which impacts on the rheumy. I still horse ride my lovely ex racers . Best wishes xxxxx

  • Hi Cornishrex,

    a lot of good information given already here. Blood tests on there own are not totally definitive but as helixhelix has already said, anti-CCP antibodies are rarely found in people who do not have RA. I have put a link to laboratory tests for RA for you to look at:

    nras.org.uk/laboratory-test...

    We speak to many people on the helpline, who like yourself have always been fit and healthy and have no family history of RA. I'm afraid RA is no respecter of this. I do hope that you feel better soon and as everyone else has said, it is good to be diagnosed and treated as soon as possible. If you have any further questions please feel free to call the helpline on:

    0800 298 7650 Monday - Friday 9.30am - 4.30pm

    Best Wishes

    Beverley (NRAS Helpline)

  • Hi - I feel these comments have said everything that could possibly be of use to you. However I have great sympathy with your plight because most people who post on here and on Lupus UK and other communities are presenting with horrible symptoms and some have no diagnosis and don't feel believed.

    So you will feel a bit of a rarity coming here and saying that you're in the opposite boat of course but it's very good to have someone like you on board I feel. The most similar experience I can relate yours to is to an acquaintance I traveled with over a year ago on a long boat crossing. He told me he suffers from a type of Leukemia which is symptom-less so he worries a good deal about each review and endlessly struggles to believe that this disease could and probably will eventually kill him (he's already in his mid 60s). He explained that the havoc this plays with his mind is endless - which I could well understand.

    I'm in a quandry with my RA because I was diagnosed with it after a nine months of hell, with a negative anti-CCP but high inflammatory markers and lots of pain and stiffness. I was put on MTX - and in common with many here I was sufficiently ill that I took it quite keenly because I was desperate to be able to use my hands again to work.

    However, after three years of DMARDs - two including MTX, my RA appears to have gone walkabouts and is showing up in ways that I find even more scary now - and no one can make sense of my symptoms or my blood results - which clearly show inflammation and autoimmunity but no swelling and very little joint pain despite high inflammatory markers.

    This is no man's land made worse by the fact that I'm feeling ill and have many invisible symptoms but I just can't tolerate any of the DMARDs I've tried to date so am presently off all drugs - feeling like I'm sitting on a time bomb - nerves dying in their droves (so it feels) and doctors shrugging and saying "idiopathic small fiber neuropathy perhaps? Vasuculits perhaps?" and privately I'm thinking to myself "all in your silly old head perhaps?".

    If whatever kind of autoimmunity I suffer from had been identified when my first baby was newly born then I think retrospectively, that I would be much better off now I'm 51. Instead each of my three babies bought terrible, widespread, infected eczema, bouts of allopecia and asthma and awful rhinitis and other allergies and endless middle and inner ear troubles and eye infections and coughs which were treated in isolation - with oral and injections of steroids and topical remedies, lots of antihistamines and shrugs of baffled concern from GPs as I wandered into their rooms once or twice a year - a complete mess of skin and pain being diagnosed with hypothyroidism, Bell's Palsy, infected eczema and alopecia. These days I look fine but I don't feel it!

    Perhaps my sons would be a bit more physically healthy themselves now if I hadn't gone through endless one off treatments and worried and scratched and suffered. So I guess that, as long as you can tolerate it, Methotrexate is a small price to pay to stave off a disease that may cause you much suffering in the future if you ignore it now?

    Twitchy

    PS sorry but I keep recommending myself by mistake when I edit - and then trying to un recommend myself - not sure how this is possible?!

  • Thanks for all your stories and thoughts everyone. I'll take the methotrexate course. Bit worried about its impact on my slowly healing caesarian section wound, which now seems to have become a bit swollen since taking the meth on sat night, but there we go. I'll mention it to GP. I'm guessing that 10mg of meth can't do THAT much harm yet.

    From a strongly positive rf / anti ccp person with normal inflammatory markers, no joint inflammation and no tiredness .....

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