First and with a bit of luck my last blog - 50/50!

A quick update for those here who have advised me in the weeks leading up to my first rheumy appointment this morning. He seemed pretty sharp, although not a great listener and quite impatient. He told me that it's all very inconclusive - which has to be a very good thing for me really although too tired to feel the full impact of relief yet. He said it could be slow onset of RA but equally could be something else such as post viral arthritis. None of blood results taken so far would indicate RA conclusively (positive Rheumatoid Factor is no real indicator of anything with RA as you all know). He got a nurse to take a anti-CCP sample then and there and a chest x-ray just in case MTX is decided on at later stage.

But there is no visible swelling or damage to joints for him to look at as yet he just can't tell. He was dismissive of the finger joint nodules now on each finger and thumb because he felt that sometimes hands do change shape and become gnarled and blemished from wear and tear, aging or other arthritic conditions overnight. I suppose I'm much more aware of them from knowing my hands intimately as I do but they are not of much interest to him he explained. He did prod, poke and bend all my joints and ask lots of questions so was thorough. He also pointed out that many strange things, including RA, can happen after the menopause because of influx of new hormones etc.

He looked a bit blank when I asked him about his approach to treating RA and he also told me there are almost no specialist rheumatoid nurses in Aberdeen and no support team for me there so my GP and the physio woman who sat in on consultation (not rheumatoid trained) would be my only support if I do in fact turn out to have RA. So I'll just have to hope, hope, hope that I don't!

He said that the lack of any visible signs made it less likely on one hand but then he was aware that I have been on steroid which could still be masking the symptoms still so again not clear. Nothing else will happen now until or if I have another flare. He did say that he would see me again when he's next up in November and if I had any flare up in the meantime then I should go to my GP and show the physio who was with us in the room and they would contact him because he needs me in full flare mode before he can treat me. Now desperately hoping it will all vanish from wherever it came and if so you'll hear from me no more.

My sister in law is staying and has decided the whole thing is psychological because I lost my dad then my mum and my best friend's son all suddenly and out of the blue over quite a short time period within of a few years. I'm not ruling this out as a possibility at all.

Anyway thanks a million all of you you are an amazingly courageous lot. If things do kick off with RA I'll be back but if you don't see my name again you can all breathe a sigh of relief to be shot of me!

Cheers, Tilda

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  • Well lets hope your in the clear Tilda, you wouldnt get the best treatment there like you say. All the very best and I hope you can find the answers to what it is, that is troubling you.

    if you feel that you need to talk to someone in total confidence why not give the samaritans a call 0845 90 90 90

    Take care

    Philip

  • Thanks Philip but honestly I'm feeling really positive and the least anxious I've felt in months! It's true that the limbo continues but I'm not in much pain and obviously don't have to contend with the suffering that many of you suffer day in and out. I've had a taster of what it can be like and know I'm pretty lucky to not have it right now beyond sore hands and toes. If it does turn out to be RA then it's obviously not that aggressive so I plan to be stoical until I can't be. If I do have it though we will seriously consider moving somewhere on the mainland with better health services!

  • Hi Tilda

    The anti-CCP test will provide more conclusive info. Hope things work out in your favour :-)

    Lyn x

  • What about keeping a diary of how you feel just in case? If (and fingers crossed that it's not necessary) you do end up having to see him again in November then it might be useful to have a record of what's been going on. And flares can be quite subtle, just an ache here and a twinge there before it goes into full on flare. On the positive side, I've found my diary has been quite a good motivation to keep plugging away at diet & exercise as I can see how much better I am now than I was. But anyway, hope it's not RA - good to have one "escape" story. Polly

  • Hi Lyn and Polly. Just woken after first night's sleep in ages. No metamorphosis into a full flare yet so things are still looking good although point taken about the possible creep Polly.

    Lyn I know about the anti-CCP test and its implications entirely because of you - many thanks. He didn't tell me what the test was called, assuming it would mean nothing to me, but I checked later with the nurse when she was doing it.

    And I have kept a diary from day one, logging symptoms of swelling, pain, weight loss (so slow!) etc. Not feelings because I felt they were dark and private. I would have given the printed off to rheumy guy but given the inconclusive and brisk nature of the consultation it would have felt a bit inappropriate and I would have felt a bit of a hypochondriac if you know what I mean?! But I'm hoping to start a proper journal which will chart feelings in the form of drawings and doodles side by side with the log, if it doesn't all just go away as I desperately hope it will! It will be called "If you get lemons, Make lemonade".

    Tilda

  • Well Tilda, that's great news. The consultant sounds typical to be honest, brisk, to the point and totally uninterested --- :-)

    For your sake I do hope it all goes away...... we all do.

    Will shall miss you. Take care

    Julie xxx

  • Gosh! Thats fantastic, I wish you all the best and hope we don't hear from you again!! :)

    I convinced myself pre-consultant appointment that mine was viral however I knew deep down that the signs were there too long for it to be so.

    Thanks for the shoe advice, I went yesterday, am now the pround owner of 2 lovely (if I say so myself) pairs and now will have to hide the bank statement for hubby for a while haha...

    I'll remember the 'lemons' take care xx

  • Thanks Wiiby and I'm feeling very optimistic today so if it all goes wrong re flare and anti CCP etc then I'll be in for a big crash and be back here with tail between legs. But unlike Philip I can cross fingers today and hope to be tangoing (mentally if not physically) through it all whatever the outcome. God I'm sounding nauseatingly healthy and happy but please don't hold me to it if it all goes wrong in the future!

    Delighted about your dancing shoes - b****r the bank account - comfort and happiness are the main priority I say! Tilda xx

  • Hey Tilda HAPPY IS GOOOOOOOD and you know where we are.

    TaTa

    Philip

  • hi Tilda

    thats brilliant news all the best for the future

    kate

  • Hi Tilda,

    Glad you are happy now. Just a small query, I did'nt know that a positive Rheum factor meant nothing? When you were in pain & on steroids with a positive factor surelay that adds up to something? Maybe I have this all wrong, but was the outcome because you have no visible swelling or damage they are not putting you on a Dmard?. My understanding is that RA is a systemic illness not all inflammation is visible. I am not trying to put a dampener on things, but maybe I have misunderstood your whole situation?

    Gina.

  • No Gina you are quite right to query this and actually I am asking myself the same thing now. I think he was just saying that because my Rheumatoid Factor was only marginally raised at 23.7 and the ESR readings were only somewhere between 44 (last Monday) and 58 on first reading 4 months ago - this was too inconclusive to put me on a DMARD yet. As I understand it 20% of those with a raised Rheumatoid Factor do not have or will not go on to develop RA and 20% of those with S. negative do turn out to have it - well that's the gist at least but I've probably got those percentages completely wrong!

    Also I was given the shot of Kenalog 80mg five weeks ago and he thought it possible that it was still in my system keeping things at bay. But to be honest even when I knew I was swollen up because my shoes hurt and my fingers wouldn't bend and rings all had to be removed a few months back it really wasn't visible to the naked eye and nor was all this heat?

    He just told me that there isn't enough evidence to confirm or rule out RA at this stage and therefore, to my relief I admit, he didn't feel a DMARD (specifically Methotrexate) would be a good idea for me yet in case it's not RA. I'm still basically in limbo I guess. I hope he will have a better idea when he gets the anti CCP results back but I admit my initial joyousness may have been premature because the weird deep heat is now creeping back from toes to knees and in my wrists and hands too and I don't feel quite so great or so positive any more. If it's not RA what on earth is it?

    And being told by my sis in law that it's all in my head as a cumulative impact of bereavements as I was yesterday did not really help - maybe a good thing that she, her hubby and two vast dogs left "for Sooth" on the ferry this morning! The problem with telling a person that their experiences are all a product of their mind is that they then feel rubbish about feeling rubbish?!

    But surely swelling should be visible and mine never really has been at all? He seemed to think it strange that everything looked so normal and no redness or rashes or sign of inflammation. He did say my knees were clicking dramatically but that could be age (great!) and he found the strength in my hands to be pretty weak - but that was it. And I know these nodules on my fingers aren't normal for me and have coincided with the recent intense hand pain but he dismissed them as wear and tear etc. I'm starting to long to flare so badly that people will have to do something about me which is really not ideal but this lurking and invisible swelling is most unpleasant and unnerving really. I just don't know what to think so had decided to ignore it and pretend that nothing's wrong and it's all in my mind - but it's hard to ignore the feeling of being rubbed in chilli powder even if there's nothing to look at!

  • Oh Tilda....Like Gina I did't want to sound negative. But with what you describe, it sounded just like my first appointment with a Rheumatologist about 8 years ago. I had hardly sat on me botty when he prompty grabbed my hands, looked at them and said, that's not RA you have classic OA I can tell by the shape of your thumbs. Whilst I was busy looking at my thumbs, as you do, he was telling me to try and wean myself off the diclofenac and lose some weight (same as my GP told me at that time) and if things didn't get better to go back to GP for re-referral. I didn't have time to warm up the seat, I just left the room, thinking how lucky I am.

    Take care

    Julie xx

  • Hey Julie don't worry about being honest with me. I have been 'coming to terms' for the past two months and therefore it felt like an unexpected reprieve when he said that it was all too inconclusive to make a diagnosis. And he's got a point really - who wants to be put on a DMARD if they don't need to be? I read somewhere that it's as harmful to treat with aggressive medication if turns out not to actually be RA, as it would be to not treat early RA, so guess he knew what he was saying. He wasn't so bad, didn't dismiss the idea that I may have it entirely, was thorough and straight speaking but I guess its a tough call with RA making these decisions when there's a lot at stake for the patient and so many variables? At least he didn't tell me I was overweight or say that my thumbs looked like classic OA. I am overweight (although I've lost 2 stone since all this kicked off!) but when he asked me about smoking and drinking and I replied no but my vice has always bee over eating he smiled and said "well we all have a vice or two - I think that's allowed" so he wasn't a downright meany like your guy!

    But I was so expecting formal confirmation that I have RA (as I'm pretty sure I have deep down!) that afterwards I kidded myself for 24 hours that it had all been a trick of the mind or a post viral thing. I don't really believe it's either but it has been a few months now since I couldn't walk and since my fingers stiffened etc so I hope I'm at least in remission and I decided to give that idea a try. Then heat and twinges in hands and toes got the better of me and brought my good spirits back to this new reality - but still without medication or a formal diagnosis.

    But as my hubby has pointed out since sis in law departed - I'm not really an all in the mind person about myself and my health. I am about my boys and get in a terrible raffle if I think they might be in any danger, or about him when he's ever been properly ill - but not about me!? I dealt with sudden deaths of both parents on my own rather well because i was far from home and I was very close to them. My sisters are both profoundly deaf so weren't able to take on the lion's share so I identified them, arranged both funerals and other memorial services for both mostly by myself and was proud of the way I handled it all. And I've learnt that I am the kind of person who grows stronger through adversity - as many people are I believe.

    And when you consider what's just happened in Norway or I think of my friends who have lost their only child (aged 19) last year in a tragic accident it's not such a terrible thing to have to deal with - especially if I get put on the medication in time and it works?

    So if this rheumatologist had looked me straight in the eye and told me "this is RA - get used to it, learn about it and cope with having it" I would almost certainly have coped pretty well. But I just hate not knowing for sure and was also in shock at how little support i will get up here once formally diagnosed - it just wasn't at all what i was expecting so went firmly into denial instead! I've lived here for 23 years but I do have RA I think the next big upheaval will be finding a new place to live with better prospects re health etc. And that's huge for us too because my hubby Chris has a well paid contracted job here and the boys are all born and bred locals so a lot to deal with - but we'll manage somehow I don't doubt!

    Off to Harry Potter now with youngest son. Hope I don't snore throughout and embarass him!

  • Dear Tilda,

    I am not sure what to make of all this?. im hoping that you are fine.. them mind is a powerful thing.. and trauma such as death/ stress can cause physical symptoms to occur.. these can be very real I can assure. you.

    . Positive rheumatoid factor normally is an indicator of rheumatoid arthritis.

    it is negative or sero negative arthritis that is harder to diagnose.. sero negative factor can occur in 20% of arthritis patients including me!!,

    It is possible to start sero negative. and as the disease. time progresses it is posssible for the factor to become positive.

    Some dieases other than RA can throw up a false positive factor again though this is v rare..( if any one is interested I can list them later on request!.,

    another factor Tilda.. and I dont know your age. is ,unless people have it from childhood. or as an unfortunate .childbirth related trigger.. the typical

    age for RA appearance is 35-45... any older.. more likely to be oestoArthritis..

  • Hi - thanks its always good to have more info. I am 48 and guess it could be osteoarthritis or several other things including my mind playing tricks post bereavement. I'm ruling nothing out really. The positive rheumatoid factor (3.7 over the normal marker so only minimally positive) coupled with raised ESR of 58 gave my GP a strong suspicion that this was RA. But other things did too such as symptoms moving about and being symmetrical and a family history of autoimmune diseases (mainly diabetes but I've also got an underractive thyroid). The other GP more or less told me she thought I'd got RA a few weeks ago - adding all these things up together.

    But I'll keep an open mind until I have to. Would be good to know other diseases it could be bearing all this in mind? Presently got the deep heat all over and a fluey ache and stiffness - sore in right foot and both hands but nothing breathtaking. I find the deep heat rather sinister now to be honest because no one else apart from Julie has ever mentioned it. Incidentally neither GPs, nor rheumatologist have even remotely implied that this could all be in my mind. I hope it isn't - I pride myself on being pretty positive-minded and strong, even if my body does let me down sometimes!

  • Ps if it is all in my mind outcome of bereavement I wouldn't know how to begin to tackle, fight or confront that whereas at least if it's something physical I can try!

    Pps are there any cancers that present as RA? someone I know a bit in the doctor's waiting room with me told me that 2 of her friends had suspect RA but in both cases it was cancer but she was called by Dr before she had a chance to ellaborate and I never gave it another thought until yesterday!

  • . Its not in your mind..!! sorry if I you though I Implied that..??

    What I meant is the stress of a death can make the symptons worse.. stress can manifest it self in physical symptons as the immnune system breaks down.. the age range is a guideline. it could be that you had mild symptoms when you were younger but you didnt notice.. or you could deal with them as your life was more happy/ less stressful.... please dont wish cancer on yourself.. the answer to that question is hopefully no!!, I know that RA pain can be so severe that it can be as bad as cancer pain!

    RA is symmetrical.. and heat equals inflammation. this normally occurs with RA but can occur with osteo.. after about 50 most people can have both!!if started with RA. .

    Surely you dont need to move?? you gp can send you to another hospital.?

  • Thanks Alison - and of course I'm not wishing it to be cancer don't worry I'm not nuts?! I just found myself wondering if this weird all over body heat might be something even more sinister that I should be looking into after that woman had left me with a cliffhanger about her friends! I had recently decided that the heat must be inflammation and today it's everywhere except my face and really powerful - it's even up my back for the first time. A friend I've just spoken to said that she did experience her hot flushes like this but I think I'm past my menopause now and anyway it's coupled with vague soreness and stiffness of joints in hands, feet and ankles. But still maybe worth considering the hormonal thing again.

    And now I see what you mean about grief and worsening of symptoms. I was starting to feel like I was in a Hitchcock movie when my sis in law said this - it's hard to ignore symptoms like these or to think I'm simply imagining them but as I say anything's possible.

    At the same time I wouldn't feel ready to phone the physio today, as the rheumatologist said I should - and tell her if and when I was having a full flare yet because there's still nothing visible to show her.

    GP can't send me to another hospital than Aberdeen - our health authority will not fund this I've already asked and he's got his hands tied.

    And it may well having good GP practice is as good as having other support in hospitals etc after all. But I am a person who likes knowledge and even GPs aren't specialists and nor is a physio. So the only specialist I would be seeing ever is the consultant twice yearly but maybe that's enough if I have NRAS and

    Also we do live on a very steep hill with loads and loads of stairs (and fab views!) so it's not just the health team bit that's concerning me re location.

    strange deep heat, ache and niggling worry.

    Sorry to be a pest - when I said I would hope to bother you all no longer I did mean it but I've still so many unanswered questions going through my mind! Tilda

  • I meant to write NRAS helpline and all of you real experts on the ground where it's at!

  • the nras are brill. they have loads of info, we are just suffers like you.. they have lots of great leaflets etc

  • Thanks - I have learned this already re nras!

    Went back to GP yesterday, even though he won't have a letter back from consultant for weeks, because hands were killing and feet bit swollen and right foot v sore too. He was v kind but said that like consultant he thought it unusual that I have no visible swelling or redness (touch heat) to date. Doesn't think it's OA because symptoms, age etc not right but does think it's something arthritic. Asked him if he thought all in my imagination and he gave a little smile and said no but that in my situ it is natural to think every last twinge is bigger and a sign so I've got to stop doing that somehow and enjoy the fact that it's not yet an aggressive inflammatory disease that is shouting and doing damage if or until time comes where it is for sure.

    As a video link would be used between here and Aberdeen during a flare to determine is RA -swolen joints and redness would need to be clearly visible on a screen. He said he would try to set this up and do it with consultant in my local surgery rather than with physio in hospital so that's good at least. He's got reservations about efficacy of video for this reason so good if he supervises it.

    Hands reached epic pain levels last night so I downed 2 paracetamol and later a ibuprofen and slept like a log feel loads better first full night's sleep in months!

  • Hi Tilda, coming late to the discussion here - but I'm interested in the need to demonstrate swelling. I was diagnosed with ra about 5 years ago, but I think it was slow onset and I'd had it a while before that. I have rarely had swelling during a flare. Just dreadful pain that is in no way visible. Don't let the Drs ignore you because you don't have swelling! Anyway, here's hoping for a good outcome for you.

  • Thanks Fiona. I told my GP about this forum and my question and he took this point about the swelling on board. I haven't yet heard the result of my anti-ccp blood test but am presuming diagnosis might be clarified if this is positive as I have a positive RF but if I have a negative or very low positive reading I suspect they will need some visuals in order to confirm the RA?

    And all of this is speculative. I did email the physio who sat in on my rheumy appointment to tell her that, although I had nothing to show I was experiencing a lot of pain and she emailed consultant so he knew this. He replied telling her that results of anti-ccp still not through so I just have to wait but she promised me that I've not been forgotten and to "hang in there". But the more people like you tell me that swelling isn't an essential diagnostic symptom I feel a degree of relief that all this intense pain isn't imaginary at least!

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