Discombobulated

Discombobulated

First Rheumatologist I saw back in June (a locum) thought I had Psoriatic Arthritis. Then the Rheumy who took over from her on a permanent basis said it didn't matter whether I had PsA or RA as the treatment is the same, at first anyway. I then saw a Rheumatologist privately (as it happens, he was my NHS Rheumy's predecessor) and he stated that I 'almost certainly' have PsA. I had another NHS appointment at the end of last month and my Rheumy was still of the opinion that specific diagnosis is not important but agreed with the private chap's treatment plan which was, I thought, geared towards PsA.

Sooooo ... yesterday I got the follow up letter from that last NHS appointment. Under the 'Plan and Opinion' section, my Rheumy states: 'my clinical impression is that she has active rheumatoid arthritis.' Gordon Bennett.

Does it matter what type of inflammatory arthritis I've got? Yes, I think it does. I get the impression that the differences between RA and other forms of inflammatory arthritis are increasingly being recognised as important ones, especially in terms of treatment. And while I can understand that my Rheumy might have very good reasons for thinking that I have RA, why didn't he tell me that at the appointment? It doesn't help greatly that the follow up letter is written for the GP: 'she this, she that' - why can't I have one addressing me directly? Is it me that's got this disease or am I just looking after it for a friend?

Oh, and I could conceivably have Lyme disease arthritis I suppose. My Rheumy sent me for a Lyme test in August. I eventually got around to phoning for the result and was told the lab had sent my sample back because they could not read the clinical details sent with it, requesting that it be re-submitted. And I think that's as far as it got!!

Discombobulated,

Christina xx

45 Replies

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  • It definitely does matter - if only for the fact that you don't get anywhere near as good results with DMARDs if its spondyloarthritis as if its RA. It probably matters a lot for the NHS too - RA treatment (where they can keep trying you on combinations of DMARDs for years before having to offer anti-tnfs) can be a lot cheaper as well.

    Ask some direct questions of someone (GP or rheumatologist) - including "who is the spondyloarthritis specialist in our NHS region", and if you aren't seeing someone who does have a special interest in spondyloarthritis, see if you can get transferred to their care. (worth a phone call to the National Ankylosing Spondylitis Society to get some names). You also might have to go back to that private chap to try and keep them pushing in the right direction. Just the fact that private rheumatologists spend a whole lot more time with you than in NHS clinics would make me put more of my eggs in that basket.

    I know I had several totally useless rheumatology appointments before I discovered that the guy I was seeing really had no interest in spondyloarthritis at all.

  • I can't avoid the sneaking suspicion that my Rheumy has felt the need to make a stand rather than follow the private Rheumy's lead and am a little wary of provoking any further reactions if that is the case! But there is also a very real possibility that his view is exactly what he says it is - his clinical opinion and, maybe, a good one. I am open to the possibility that I have RA, there's really no reason why not that I'm aware of which is why I would like to know how he arrived at his opinion.

    I am going to do what you say, though & find out who the spondy specialists are. I've noticed that hospitals list their consultants' specific areas of interest so that's another source.

    The very thorough verbal and physical examination I got privately was worth every penny. But there's no way I'd be able to afford MRIs etc. and, as I've suggested above, I can't avoid this feeling that I need to try to forge a positive relationship with the NHS people. Professional pettiness is all too real, isn't it?

  • Ye ! I had a similar experience with my GP who had never heard of ARava or Humira, but the med student he had with him did, so maybe hope for the future? axx

  • My NHS Rheumy is fairly young & patients I met while waiting reckoned he was up with the latest ideas! But he isn't that great at communicating which is why I don't know what to think about his approach. It's all so tricky!

  • I think you need to challenge this letter Christina. It goes on and on and I think Earthwitch is right to say that you may have to return to the private chap a few times for the pressure to be applied re PsA. On the other hand at least you are now on the highest dose of MTX and should now push for another DMRAD to be introduced as well - sort of DIY rheumatology similar to my approach and others on here I guess. It's like a new career without the income isn't it?!

    The thing about the letter is weird - how do you get to see yours at all I don't? If I've seen snatches its over my GP's shoulder and I get really paranoid when I read "the patients seems to think.." Or "she seems preoccupied with possible side effects.." So asking for copies would probably be counterproductive. I'm amazed how paternalistic our system is - even more here than with you it seems. Tilda x

  • Yes it's a saga all right. And the thing about the Lyme test is just a little putrid cherry on top! As you say, the DIY approach is how it so often goes and I agree that all I need is for the way to be left clear for this rather than obstructed. Well, the NHS Rheumy did understand my main concern about diagnosis: whether I'd be assessed using the DAS criteria if I need anti-tnfs or against the more liberal PsA criteria which I already meet. (In fact it was quite nice to feel that there was some meeting of minds - communication is all!) He told me that basically he would use his clinical judgement if the DMARDs don't work.

    However he would not agree to an MRI scan. So my fear is that MTX will appear to 'work' - I think my swellings are a bit smaller and my ESR is going down at a snail's pace - but that it is working on symptoms rather than being disease modifying. As I think you know that's the big concern re. PsA and MTX - that the drug does not check joint damage even as much as it can for RA. If that's the case then he could stop short of the anti-tnf bit of the private chap's treatment plan & my joints will continue to deteriorate while I feel just fine!

    How dare they say that you 'seem preoccupied with side effects'! Let them bloody well take these drugs. If they wrote the letter to the patient and copied in the doctor they might not be quite so patronising. (This health authority always seems to send copies.)

    I'll put some thought into challenging the letter. Thanks!

  • What do you mean by the 'liberal PsA criteria', for me to have anti-tnf for my PsA, I had to follow a regime of several drugs and prove they did not work before the option of anti-tnf. Your statement sounded as though you can get them easy, unless you have ra.

  • I pushed my rheumy for tests for Sjorgren's (after doing my own research) as I have serious problems with dry eyes and mouth and swelling in and round my eyes. I had a blood test which my rheumy said was negative, also the rheumy nurse who ordered the test said it didn't really matter as the treatment was the same. My rheumy also said the dryness might 'just' be permanent damage from the RA but didn't really offer any help for that!

    Now I have just been for a pre-anti-tnf consult with the nurse and my notes state my diagnosis is RA with secondary Sjorgren's, all the while no-one seems bothered that my eyes might be getting damaged despite me being a squeaky wheel. Maybe there just isn't anything that can be done, maybe it is fairly common to just be classed as a generic sort of anti-immune sufferer.

  • So looks like your self-diagnosis of Sjorgren's became official without anyone telling you? And that means that your squeaking got you part of the way .... but not as far as your eyes being actually taken care of? I keep having partial success too. Stops short of the 'spending more money' bit!

  • Well my rheumy did mention something about referring me to an opthamologist but I'll not hold me breath waiting for an appointment!

  • bleeding nora feather

    they are as bad as my private and nhs one i think it does matter from what i read.

    and if you have Lyme disease i thougt that came from walkinging in fields and ticks i may be wrong but i thought that came with a bite.

    they should be addressing the situation by not going from pillar to post but doing their very best to evaluate and get the diagnosis right

    i know its a hard ailment to sort but doctors of this nature need to evaluate properly.

    its not rocket sience ie when you have seen hundreads of patients it should become more easy to evaluate whats going on with symptoms.

    my gut feeling is the guy you saw private gave you more time to state your condition like mine did so i would be rater tempted to say look here we are going round in circles its my body that im minding this thing for but i only want drugs that are for the condition the private rumi said.

    its my bloody problem if im wrong NOW DO IT GOS IM LOOSING THE PLOT.

    regards john.

    when i see mine again i am going to say give me some sulfazine lets see who is right and while your at it rip into that knee cos its cream crakered

    just had a moan for ya feather cos it makes me blood boil how ya being treated.

  • Thing with Lyme disease is some ticks are minute and not everyone gets a rash. And some people get a rash that doesn't match the 'classic' Lyme rash. After lots of thinking back with my husband we remembered me getting a rash after sunbathing on the Hampshire Downs about 8 years ago - no idea if it was Lyme or not. If Lyme disease goes untreated it can manifest itself in just about any way imaginable and inflammatory arthritis, especially affecting the knees, is one common chronic symptom.

    I too have a gut feeling that I have PsA but I think that it is better to have an open mind. If my Rheumy honestly thinks I have RA I just want to know why he thinks that. I've got time to explore what is going on because I'm due to start on Sulfasalazine in early January if I'm no better by then & that all fits with the treatment plan.

    You are not on any DMARDs are you? That does seem surprising given that your condition has obviously worsened - when you started posting a few months back you seemed to find swimming easy-ish but I think that's changed(?). What do you mean by rip into the knee? Aspiration? Your situation is quite frustrating too - do push for the sulfa which I think is what your private Rheumy wanted.

  • hi feather didnt know their was small ticks worse than being in australia this country now

    yep im struggling with the swimming in that im pushing to much

    like yesterday whent for a walk 2 miles felt ok ish then later on whent for me swim

    yesterday night i had had enough so whent to bed got up ached like hell.

    walked up and down back just to get mussle moving did a small walk today but ankle felt giving way and walking was like thinking not to throw weight over onto the better knee.

    just keep wondering if its somthing in me back like si joint not level or ive walked to much on the bad leg

    i noticed last night did a bit of sweating again so im thinking do to much and you sweat in bed wondering if this is what they call latic acid not being geting rid of due to exersise today going up to caravan see how it goes not looking forward to cold up their and shut van up.

    going to drop private rumi an update and tell him changed doctor and about sulfazine.

    rip into leg no i mean go in and clean whats in their out but im sure the bursa is infected some how in all this cos thats where everything started from one left knee. then spread like wild fire. i can even tell them what it feels like on your immune system attack god its a strong thing that when it thinks somthings wrong and its not

    hope you get something sorted feather soon rather than later im going to be pushing on next phisio appointment ive done everthing to the letter of the law and got knowhere realy speaking only more pains and aches could be a bit of fibro thrown in due to stress

  • I've always disliked fussiness about food but I have to admit that there seems to be a strong connection between certain foods and how I feel since I've had this disease .... and one of the main things I notice with some food & drink is serious overheating / sweats. Main culprits: red meat, 'rich' or heavy meals generally e.g. lasagne with combo of meat & dairy, alcohol, coffee. I know that sweats are a real pain for you so thought I'd mention this. I love almost all food but a relatively light, predominantly vegetarian or fish diet seems to make me feel so much better. (But hot curries suit me fine, oddly enough!)

    On the face of it it's really hard to understand why someone with your symptoms is not on Sulfa or another DMARD. I just don't get it. It's not like you to mention stress so things are bad, I think. Make sure you mention that to GP or Rheumy if you see one. Also, have you had a blood test recently? (I'm wondering what your ESR - inflammation - level is like.)

    I'm due for an aspiration but don't want one. I'm turning into a right wuss. I know what you mean now about cleaning the knee out, it's called an arthro-something, I think.

    Thanks for your concern John & hope you get sorted soon too.

  • fether yes i would like to know what the hell my esr is it must be through the roof i think cos not like me to feel like getting back in be and doing nothing.

    but re endescope im thinking been going since april with this pulled back a bit by taking the pain now if i have this done im back to square one IE PULL BACK AGAIN and i feel like swearing to have to do it all over again when ive kept complaining regards that knee beeing the worst

    at all these months now last time i was pulling back throwing every bit of energy i had at it now im making no head way just making matters worse i feel

    the thing i hate mor is cold feet

    so when i get back i will make an appointment with the new doc see how i get on please please i hope give me an xray again.

    im sure their is somthing under that knee cap that has spread like wild fire would have gone with patella tendonitus but ya hand dont get lumps with that im sure i will stake my house on that.

    its been 5 months since last blood tests so a new one would give us an indication.

    but im still going to also ask about sulfasine must cost somthing if other doctor said see how you go on now if it flares up again new appointment would be months away.

    dont read up[ on what ya can get under your knee to see what other things it could be cos you may not like to see what it could be their is a few bad things that can start under the knees much worse than rumi regarding cartlidge that can spread through your body and i dont mean canser.

    have a good day will message ya whjen i get back see how ya doing

    i thought you where on the mend other day on your blog and dont let the bugger get ya down.(i know its hard)

    regards john

  • Basically John its all about money. Everything is these days despite doctors trying to dress it all up to look like caution in the best interests of the patient etc. If you were still in the work place Christina - or had young kids to mind - then they might just acknowledge your disease as PsA because not to do so would have all sorts of other long term implications and its in their interest to keep people in their workplaces or well enough to look after their kids if possible - but I'm very cynical and doubt their intentions towards patients who are already out of the workplace or older.

    Fortunately, although I'm sure he's still mindful of the practice budget (as he should be really) my GP gets indignant when he thinks our health authority is making decisions based only on money and not on quality of life of his patients. But that's because he works in a small community and has to see people socially and mix with us all to a degree. So if he knows that an elderly gentleman is suffering and can't take his daily walk over the hill anymore for example, but that a knee replacement would buy him five more good years of walking over that hill, then he will lobby everyone possible for this to happen and will encourage his patient to do so too. It's partly about empathy I'm sure - we are all going to get old and its in all if our interests to remember this and keep ourselves as mobile as possible. But also its no good if he has this same elderly gentleman coming in to see him more often suffering from depression and deteriorating unnecessarily because he's not able to walk over the hill is it? If you are in a bigger place or an area where general practice is just about ticking boxes and meeting budgets then its a very different thing really..

  • Well ranted Tilda - so right and also so sad.

    I feel very fortunate where I am in terms of care.

  • Oh god I feel ancient! But I agree with you. I've had quite a few offers of work from the supply teaching agency and they've been quite patient but have gone silent now. I'm not gagging to get back to the classroom but I sometimes love it when I am there and at some point we will run out of money - I do very much need the option of going out to work. So I'm going to emphasise this reality to my Rheumy.

    And again, I've got no 'allegiance' to PsA whatsoever. So even though I am very hacked off with all the vagueness, confusion, poor communication etc. I could be persuaded that I have RA .... just so long as it is not a cost-cutting diagnosis!!

  • Sorry - didn't mean to make you feel ancient or unemployed either because of course I know you are neither. But I really DO think it's important to emphasize that you might soon be back in the workplace whenever you see a rheumy or doctor. I have found that whenever I have my blood taken and my GP asks me to clench my hand (my veins play hide and seek a lot!) and I tell him I can't yet do that it seems to galvinize him a bit more? He knows my hands and eyes are my life and so when I said to him today "I've just started a new art commisssion" he immediately looks at my hands! The irony is that the stressful part of this new job will be for my mental state/ brain not my hands - which will only come to the fore quite briefly and most enjoyably at some stage later on after loads of consultation, engagement and organisation (me!). These people really have no idea about what public art involves, or even how systemic RA is and how it can affect our mental state, but that suits me just fine for now!

  • I feel very much the same about returning to teaching Christina. I absolutely loved it and was glad of the income but the thought of returning is somewhat overwhelming at the moment.

    Not being tied to work can be a really positive thing in many respects but I do feel as though I am becoming a bit of a non-person. Is that work, age or self regard I wonder?

  • I think if you are not going out to work and have RA, PsA, SARS, the Black Death or whatever I have then you have to fight tooth and nail for your self-esteem and to create a sense of purpose out of whatever's available. Which reminds me, I must get out of bed and go and do something.

  • Hi Feather,

    Gordon Bennett has a lot to answer for doesn't he?

    How horrible to be in a situation of such uncertainty when you really need to be able to trust that the people who are caring for you and prescribing all sorts of meds.

    It must be very frustrating to have the two differing opinions and not knowing which one is correct. Has you GP commented on the different diagnoses?

    I am curious to know what led you to get a second opinion. Was it because you have always doubted the other Rheumatologist? If so then go with the other diagnosis because at least you will have more confidence in the treatment if your gut feeling is telling you that this is correct.

    As for lyme desease - I guess it makes sense to test for it. I see you have a lovely dog and down here in Devon we have certainly noticed that there seemed loads more ticks around this spring - probably the strange weather patterns.

    I hope you get it sorted soon.

    Judy xx

  • Yep, hit the nail on the head - I've been going round in circles for 11 months now and would have hoped that some trust might have developed by this point.

    I don't think any of the GPs at the practice I go to would like to stick their necks out as far as to comment.

    The main reason I got a second opinion was that the first time I saw the NHS Rheumy in his new post (I'd previously seen a temporary one) I was still on steroids. My ESR was under 15 and I could walk a bit more easily. So he did not delve, really, and left me on 15 mg of MTX. As soon as I came off steroids reality hit and I knew someone needed to see that reality. I phoned the Rheumy nurse and she said she would try to bring my next appointment forward but did not hold out much hope. When I mentioned going private she recommended the doctor who had only just retired from my NHS Rheumy's post.

    I don't necessarily trust my gut feeling - I've been wrong too often! So I don't really want to pick a diagnosis for myself just yet. I do need clarification though, so I will be asking for that. I do get fairly frequent appointments but it seems to be a case of quantity not quality.

    How are you Judy??? I've been wondering whether they ever let you on that bus! And how is your ankle without the plaster? Hope all is well, you sound perky!

  • I'm still plastered unfortunately Christina and still non-weight bearing. It's been a bit of a long haul but at the risk of sounding gushy and insincere, I've learned a lot along the way. My son drove me up to Herts to stay with my sister last friday. Getting upstairs was interesting and here I sit for the next few weeks.

  • I know exactly what you mean about the journey though it is hard to voice without sounding cliched, I agree. Again though, Gordon Bennett! (And what a pedant I am, wondering whether he should have the two 't's!) It is a long haul for you, I can see that. I don't like to ask too many annoying questions as I'm sure you'll blog and let everyone know how things are going when you are ready.

  • I'm with you on the two 't's thing!

  • my esr was 20 feather so your doing a bit better than me must ask for bloods again

  • Hi Feather

    Unfortunately for some people you don't get a certain diagnosis, and they may never know for sure whether it is PsA or RA, but fortunately there is an overlap in the treatments given, though I won't pretend to know enough about PsA to say that there wouldn't be any difference in treatment.

    However, the letter that's written to your GP should reflect the conversation that you had, and if it doesn't (in that it's saying you probably have RA when he said he agreed it was most likely PsA) then you should probably query this, and if necessary they may change the letter.

    It's never easy when you don't have a firm diagnosis, and although it's good if the treatments they use would work for both conditions it does mean that your response to these medications won't give them any further clues on your diagnosis!

    Worth querying the letter though. I'm just so sorry you're being put in this state of confusion.

    Adorable photo on this blog by the way!

    Kind regards

    Victoria

    (NRAS Helpline)

  • Thanks Victoria. I really do see that it can be incredibly difficult to give a certain diagnosis sometimes. But if that's the case in my case I'd like to be told why. Maybe I wouldn't get the in-depth explanation that I might wish for, given time constraints at appointments, but some attempt to put me in the picture over and above 'it doesn't matter' would be much appreciated. This is especially true as my Rheumy knows that I've had a bit of variety diagnosis-wise.

    Additionally, the private Rheumatologist I saw (until recently a much respected, long-serving NHS consultant in the hospital I go to) outlined a treatment plan for me, something that had been lacking until then. In his opinion, I had an intractable case of PsA and, as he wrote in his letter, he thought it might well be necessary to move onto anti-tnfs 'sooner rather than later.' And whilst I hope that DMARDs will work, I still have a nagging fear that I might actually have PsA but be denied anti-tnfs should I need them because of the more stringent RA criteria. My current Rheumy does seem to have adopted this treatment plan but I'm not getting a sense of any real determination or direction.

    It may simply be a communication issue. I have no intention of creating hell! I just want a bit more clarity and direction - this isn't the only confusing thing that's happened by a long chalk!

  • You know you can ask to see your medical records don't you? You don't have to do it through a formal data protection act request, but can just ask your GP's practice if you could see them informally. Many are quite happy to let you see them. I've only done so once, but they didn't make an issue of it at all or even really ask me why I wanted to see them. (I had a little white lie all ready just in case about wanting to get a quote for private insurance so needed to remind myself of dates etc...) But anyway, you should be able to see the letters from the consultant.

    Oh and do pursue the Lyme test...it would be more than discombobulating if it turned out to be that! Pollyx

  • In theory the letters from the consultant are the ones I get copied in on. I'm not quite sure what I'd be looking for as I think it's an absence that's the problem, an absence of interest in finding out what's wrong with me, rather than something that might be hidden from me. However, it is good to know it's that easy to see records. Could I cope with it I wonder? Teenage traumas, the births of my children .... It'd be like what they say happens when you're drowning ... my whole life flashing before my eyes! Aren't most records electronic these days? And if so, do they print them out?

    Yes, I must pursue that Lyme test even though the NHS tests are notoriously unreliable. I'd already made my mind up to try to send a sample to the lab that is meant to do more accurate tests if I got a negative NHS one .... it's just going to take a bit longer now!

  • I think you're probably right Feather. Communication is so often the problem in these instances. It can make a huge difference if they take the time to explain their thinking to you. I hope that happens now!

  • I think the main issue here for you to try and address is the anti-tnf one. If your consultant is genuinely unsure whether you have RA or PsA then he should have made this clear to you face to face. Now, entirely understandably, you are left wondering whether his change of direction in letter form is because he's trying to prevent you going onto anti-tnfs straight away for financial/ political reasons.

    This is not the first time his letters have conflicted or contradicted what he has said to you in a consultation and therefore I think I'd take Victoria's line and take issue with his letter. Could you do something as simple as write back to him directly perhaps? I think he needs to be reminded of what the private rheumy told you in no uncertain terms because these letters are undermining your confidence in the NHS and that needs to be said in my view.

    Through my old GP friend I know of several people (not by name of course) up here with diagnosis's of PsA who are taking MTX and anti-tnfs now. Perhaps their cases were more clear cut because of psoriasis and I know that one of them works offshore so for that reason he ended up seeing a private rheumy in Edinburgh because attending the infrequent NHS rheumatology clinics here would have been an improbable nightmare for him.

    Maybe you need to hunt for an NHS specialist in spondyloarthritis near to you and arrange to see them privately. In fact maybe your private rheumy could recommend someone if he no longer does NHS work himself?

    Are you sure that PsA can be gnawing away at your joints while you are feeling fine under the MTX regime? I thought the MTX worked for us by knocking our immune system down so that it no longer has the power to attack us? Surely it's steroids that can mask symptoms not DMARDs - that isn't how they work is it? I know I've had similar concerns when my ESR was still high and when I was getting strange symptoms such as pins and needles but I was assured by most medical people at the time that it's symptoms that count with inflammatory arthritis and being relatively pain free made the likelihood of there being active disease very low. Is it really so different with PsA I wonder?

    Personally I think you need to push to be put on Sulpha and then Hydroxy asap. If some people can be put straight on all three (step down method favoured in parts of Scotland) I don't understand the need to wait in your case? If you have tolerated this combination of therapies, as Polly and others seem to have ( andI realise you've recently been moved to injectable MTX because of side effects Polly)- then you could see if they have brought your inflammation and pain right down and trust that this is enough for the time being. If no remission is forthcoming then RA or PsA - your disease activity score must still be high and you should then request to be put on anti-tnf. I know it's often more complicated than this in reality but that would be my plan and I wouldn't be fobbed off by anyone, either face to face or in letter form.

    I would also be very assertive with your GP about all this and tell them if they can't track down some results for your Lyme test you will be making formal complaints to your area health authority about them! Also bully them into getting your an MRI scan - it's not just rheumies that can order these you know? Time to kick ass while your legs still permit perhaps Christina? this delaying has gone on too long for you. Whatever you have it still needs treating properly. Tilda xxx

  • Thanks for all the thought you've put into this Tilda. To address the last point first - it's my Rheumy who does not seem to have re-submitted my Lyme test. The Rheumy nurse said not to worry but I said I'd phone in 2 weeks i.e. tomorrow, to check.

    And then the middle: yes, there seems to be increasing concern that methotrexate is not disease modifying in PsA but can reduce symptoms. It's becoming quite a commonplace view, it would seem. I assume, but do not know for sure, that that is why it is easier to get on anti-tnfs with PsA. Although another, more cynical possibility is that there are fewer people with PsA so there's not the same financial imperative to keep the floodgates high. I think that view is based on patient studies more than theory so how it works (or doesn't) is a bit of a mystery. It could well apply to me - my ESR is still 60 something, I'm anaemic and my white blood cells are low but mobility is better - today I climbed over a gate! - and I'm beginning to feel as good on MTX as I did on steroids. And of course my knee joints did continue to deteriorate in the first 3 months of MTX but then that was early days. It's a bit more complex though ... for example some studies suggest that higher doses of MTX might just be disease modifying.

    Bearing in mind how much better I've felt in recent weeks I'm not inclined to push to be put on anti-tnfs straight away. I see that as a huge step. I just want to firm up that treatment plan that has them clearly identified as the right treatment if my disease activity - swellings and ESR - does not reduce in the next month or so. I have had high ESR and big swellings for 11 months now & I know that is serious but the improvement has only just started and I am prepared to give it a bit more time.

    Just one more thing ... I have so little pain, more soreness than anything, I'm so lucky. Pain started creeping back but I then started taking Naproxen and now only take 50% of the prescribed dose but it (or the MTX or just luck) still work fine pain-wise. That aspect of things sometimes makes me think I have an odd sort of inflammatory arthritis but once again it's probably the case that fortunate pain-free individuals don't tend to post here but do exist! (As well as you that is!)

    Having felt so awful previously it is sooooo tempting to fill every day now doing things that have nothing to do with my disease (apart from my HU habit!) but all these great replies make me realise I must address that last letter. So I will write to my Rheumy directly. I will be very polite because that's the way to go but also because he may well be a good doctor, I honestly do not know yet.

    Christina xx

  • All sounds good and intelligent as I would expect from you! I think you should find a way of politely qestioning the discrepancies between what he says to you and what he's writing about you - emphasising the private rheumy's thoughts that this is actually PsA. Don't be too polite or he may just not do anything?! Polite but with a hint of menace would be good! TTx

  • I suspect that if Christina goes armed with all the amazing information and advice she has received here the consultant is very likely to sit up and listen. There is nothing like information for inflicting menace. (in a polite way of course!).

  • I know - it's amazing to me that some medical people seem to find it very threatening when we know more about some aspects of rheumatology than them - but it's our bodies it's affecting and we are the ones swallowing the pills or injecting ourselves with these chemicals so we bl**dy well should be informed I feel - and they should be pleased to learn from us too?!

  • Missed reading messages here for a couple of days and come back to find this incredibly interesting discussion, that just rings so many bells for me. I really hope you can get some answers and I do think the key is just insisting that the rheumatologist really does tell you why he is thinking the way he is, as well as openly talking to you about the consequences of treating one way or the other (as PsA or as RA).

    I too can't understand why they don't do MRIs more often, and if they do do them, why they don't do them properly. I had two separate MRIs when I had severe back pain and neuro problems, and because it was a neurologist ordering them, they didn't bother requesting the proper sequences (STIR or contrast enhanced) to show inflammation - which meant they ruled out MS but were useless for identifying anything else going on. Now, in spite of a private radiologist and a private rheumatologist both recommending upper spine MRI with STIR sequences, no-one in the NHS is interested in ordering them, and I keep getting told "its not necessary". Well, actually, the private rheumatologist thinks it IS necessary, and would help point to a diagnosis, which would help point to better and safer treatment than steroids. I suspect I'm just going to have to save up and get them done privately though.

    Keep asking questions. Get copies of your notes (through PALS or if you are in Scotland the NHS liaison folk in the CAB). And definitely ask strongly for an explanation of those discrepancies and make sure they are corrected.

  • How common do you think the view that PsA and RA are significantly different and need a different approach is amongst Rheumatologists? And I also wonder how many adhere to the view that MTX is not disease modifying for PsA (or at least to the view that MTX is less effective for PsA than RA).

    Isn't the reluctance to do MRIs just down to cost? I suppose it could also be something to do with fear of litigation - I can't quite think that one through but it's a possibility seeing as MRIs can show what happens when the Rheumys get it wrong. I think I might get an MRI scan done privately too but as they have to be expertly interpreted I can imagine there's still room for confusion. I think you should go for it, though - galling when we're meant to have a free health service but worth it if its a step towards appropriate treatment.

  • Oops I submitted this comment without editing it first - sorry!

    It is surely just about money once again don't you think re MRI scans? The friend I mentioned on Allanah's blog now has lost all sensation in one buttock and down into her thigh - and this includes her private parts. And this all because the GP didn't refer her for an MRI when she had severe back problems in the first place several years ago - which would have confirmed the rare but potentially very serious condition Cauda Equina - which could have been operated on appropriately and left her fully functional. I found this so shocking when she told me but she's just relieved to be able to walk and not have to use a catheter for the rest of her life so wasn't going to pursue this with her GP. When I googled this condition it came up under "Sue your doctor" which I felt must say an awful lot about how remiss doctors can be in ordering MRIs for their patients. I know that if I were a doctor I would feel horribly guilty if I didn't rule out these possibilities for my patients - how do they square it with themselves I wonder?

    The one part of your research I haven't come across and am struggling to grasp is this idea that MTX could be masking your symptoms Christina. I asked my GP about this a while ago when I was concerned that my RA might still be active despite the lack of pain or visible swelling - as my ESR was still pretty high. He explained that unlike steroids DMARDS aren't designed to mask symptoms - this is just not how they work. MTX works by suppressing your immune system enough to modify the disease activity. If your disease is very aggressive then MTX might not be enough to suppress it adequately in which case other dmards or biologics may be introduced. But if you are feeling better then it must surely be because MTX is working - at least to some extent?

    What I mean is that MTX is not a painkiller and, unlike steroids, I don't think it can mask RA or PsA as such - so I think you must mean that it is just not strong enough on it's own to modify PsA as effectively as it needs to? Sorry to query what you are saying but as Earthwitch says this is a fascinating discussion you have started and I'm hooked!

  • I read your post, went elsewhere to get a link for you, came back & you were gone! I thought I'd been seeing things!

    Here is a link re. MTX and PsA - it's a PowerPoint summarising a study rather than seeking to explain why MTX might not dampen disease activity in PsA but the title alone shows that this view is out there & I have found quite a few sources coming at the same view from various angles: rheumatology.org.uk/include...

  • I should be asleep - boys to get to school and MTX jab today has wiped me out for some reason so my brain can't be trusted. Will try and read it tomorrow - thanks! TTx

  • I've read it thanks Christina. A lot of thoughts have crossed my mind - about my own experience to date mainly. I do now understand even more clearly why you feel the need to separate PsA from RA - because it changes the way you should be treated. The part that muddles me related to the ESR readings. I feel I too am being hoodwinked - although much less so now I'm on injectable MTX and my ESR is down to 30.

    When I last saw my rheumatologist in July (looks like I won't be seeing him again until March now despite him saying "I will see you in November") I was feeling fairly pain free - not quite as much as now in retrospect but it's all relative. However my ESR was sitting at about 58 still and this concerned me so I asked him what it meant and whether it was possible for me to still have active disease despite the lack of visible or physical symptoms. He said he thought it unlikely and it was symptoms that he would take into account first and foremost. I then reminded him that he had diagnosed me 9 months earlier with "RA as a working diagnosis - but keep an open mind things could change". So I asked him if things might have changed or if he still stood by that diagnosis and he answered that yes he did but that RA was just a name coined by a group of rheumatologists and he felt the reality is that it is actually an umbrella name for several different arthritic diseases.

    So what bothers me is that I came on here with my high ESR readings and many people, who are in a lot of pain but have low readings, said that ESR is not that important and what matters is the symptoms - similarly to what my rheumatologist told me. And yet now you are showing us a PP summarising that there are types of inflammatory arthritis such as PsA where the main diagnostic tool is the ESR and if it's still raised, despite the disappearance of symptoms relating to IA - then it's the lack of symptoms that marks whether the disease is still active not the high ESR? And equally for those many on here to have low ESRs but are pretty certain that the RA has not gone away because of high amounts of pain and swelling - and yet are prevented from going on anti-tnfs because of this low ESR - this is horribly confusing.

    So what I'm starting to think is that it's all a conspiracy on the part of the NHS to tell people that their inflammatory arthritis is being effectively modified - either by using the lack of symptoms or the low ESRs - to keep their DAS too low for them to qualify?

    On the other hand I also am now wondering why many more people are not encouraged to go on injectable MTX rather than tablets because I read the other day that scientific tests were done to compare the two about 8 years ago and it was found that injectable MTX is significantly more effective than the oral equivalent. So why isn't it made available to everyone from the start then? Because it also costs significantly more?! Tilda x

  • Re. ESR .... there was another discussion recently on here about RA & drugs & how serious RA actually is ... you know the one? And it's long-term inflammation that makes RA etc. so very serious isn't it? So I've always assumed that ESR & CRP are very important with the proviso that there are some people whose ESR etc. does not necessarily reflect how much or how little inflammation they have.

    Must get on before the day disappears but will be back to this no doubt!

  • You almost sound more convinced than me! I am a bit cautious especially as the MTX group only took 15mg. I think the ESR graph shows that (average?) ESR for both MTX & placebo group ended up lower at the beginning of the study than it had been at the beginning, which puzzled me at first. But then I read in an article about this study that almost all the patients were taking other drugs - either mainly or solely NSAIDs, can't remember which.

    Earthwitch and Andy both with AS have made me realise that NSAIDs have a real role to play in spondy-thingies. I used to think they were 'just' painkillers. And the reason I'm taking only half the prescribed dose of Naproxen is in the hope that I can continue taking it for longer that way - it seems to give so many people digestive problems - just in case I have got PsA & it's the NSAID that's helping me more than anything.

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