I had my second Rheumy appointment today. It would be an exaggeration to say I prepared for it like a job interview - I stopped short of a powerpoint presentation - but it felt a little bit like that: much at stake and they don't come around very often. I did go over and over the key things I wanted to cover though, even to the extent of practising asking the most important questions without waffling. My husband came with me and he was on the money too.
Last time I saw a locum Rheumy and this time the new permanent consultant. At first the consultation seemed to be going down the route of a discussion about Methotrexate and steroids. All useful stuff in theory, but nothing I didn't know and the clock was ticking.
My one main concern was that I appear to have sustained significant, permanent damage to my knees in a three and a half month period. I know this because I was x-rayed in the Orthopaedic dept. at end of February: no real damage to weight bearing joints, just the patellae and then again in Rheumatology in early June: significant loss of cartilage and erosion of bone. I told the Rheumy this and that I wanted him to compare the 2 x-rays.
He got them both up on screen and hummed and haaed a bit about how they were like two different photos, making things look different because taken at a slightly different angle etc. And then he conceded that they were, though, very different and that, yes, the damage had happened very quickly indeed. Things seemed to change from that point.
The upshot is that he stopped trying to tell me that it doesn't really matter what sort of inflammatory arthritis I've got because the treatment for most types is the same. Instead he quizzed me more closely about the collapse I experienced back in May and started to consider possible diagnoses that might explain such an aggressive episode.
He mentioned the possibility that I might have had an infection and that what has happened to me might be a one-off episode. At that point my husband jumped in and asked whether Lyme Disease might cause such an infection and the Rheumy said it might be one explanation.
I've been tested for Lyme Disease now, I've had more x-rays (which was not on the agenda at the beginning of the consultation), he has promised to send me for an MRI scan if my knees have deteriorated at all and is going to see me again in 8 weeks.
I'm very happy about all this. I'm sick to the back teeth of the assumption that I have RA or something like it and that's that. I know that my symptoms probably add up to that conclusion but also that there are some things going on that might suggest another explanation. Lyme Disease is a very important one to rule out if only for the simple reason that MTX is not the treatment for it, antibiotics are.
I feel that I had to lead this consultation to an extraordinary degree. The Rheumy seemed very good: able to engage with me as a patient, to think really quickly and clearly about how best to proceed and a nice person to boot. But he hadn't even compared the two sets of x-rays in between which I'd had major signs of disease activity. And it was doing that that changed how he was thinking about my illness.
I think we have to be assertive about what we need and want from the health service. The NHS does some things brilliantly, there are some great people working in it but as patients we are always up against serious time and money constraints. I allowed myself to be fobbed off once and that seems to have cost me dear in terms of my mobility, it's not going to happen again.
Hi Christina. How brilliant you are to have led your own consultation in this way. I relate strongly to this having, as you know, had to do similar stuff myself. Unlike you I haven't taken my husband to any of my 3 (and a half inc telemed) consultations - because neither of us have been convinced that this would help me as my OHworks nights and can be a bit dippy!
My cousin was diagnosed with Lyme Disease a year ago. She lives in rural France and has a brilliant GP who has quite a radical attitude and decided to look for Lymes. She had a clear positive and it is mild but unfortunately has suffered from it for quite a long time - this she knows because it must have passed to her young sons in vitro as they are both positive too. She told me that she takes antibiotics as the approach is to boost the immune system rather than whacking it down as with RA.
What a shame it so often takes us to research our health problems and to force doctors to pay heed to our findings? My cousin said that there is still a huge lack of awareness of Lyme disease in Europe compared to the states and she was really lucky to have an enlightened French GP. Many get diagnosed with inflammatory arthritis and then get put on the opposite treatment to the one they need. Not that you necessarily have Lyme but great at least that you forced the rheumy to take note. They earn so much that we assume that they will be joining up the dots but then equally there are relatively few NHS rheumatologists so they are inevitably a beleaguered breed. Your blog demonstrates how important it is that we educate ourselves and then push for the so-called experts to open their minds and do their jobs better.
Keep us informed about the results please. Are you to continue taking MTX for the time being or not?
Tilda xxx
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Hi Tilda,
I read my post once I'd submitted it and cringed at what I said about leading the consultation - I was like a dog with a bone, that's all and what seems extraordinary to me is that I had to be so determined in order for anything whatsoever to happen beyond 'keep taking the tablets' and also that consultants don't seem to look at x-rays.
I think that a diagnosis of inflammatory arthritis can be made quickly, on the basis of a few indicators and that's good if it means prompt treatment. However there are pressures on Rheumatologists to class that as 'job done' when in fact there is obviously more to investigate.
I recall you telling me about your cousin when I blogged about Lyme Disease a while back & thanks for that as it helped keep that possibility in mind.
I am going to keep taking MTX because I do understand that I most likely have RA or PsA.
And, come to think of it, I'm not sure what he is going to do to check out the infection possibility. I did have lots of fluid aspirated from my knees in June but what did they do with that, I wonder? Straight down the loo, no doubt. Oh well! Can't cover everything but for now I feel good about how things are going. The Rheumy did mention that his aim was to get me off MTX in a couple of years & that was right at the beginning of the consultation, so I like the cut of his jib.
More power to all our elbows,
Christina x
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But if he thought you did have RA or PsA then why would he want to try and get you off MTX? I'm still not quite clear about this Christina and I'm very glad you will be seeing him again in 8 weeks because it is important that the treatment you are on is the right one go the condition you have.
For instance I have read that PsA responds better to early anti-tnf - which in turn is more effective if MTX is in the equation? and there other forms of inflammatory arthritis such as Lupus which responds best to Hydroxichloraquine. So this idea that it doesn't matter what form of inflammatory arthritis we have as long as we get the right treatment is a bit erroneous from what I can see? Every person with RA seems to have a slightly different presentation and some don't respond to the first drugs at all as we know from what we read on this site. Also there seems to be a myth that RA that presents clearly in the first instance through blood and symptoms is more aggressive but that doesn't seem to tarry with people's experience on this site either? The sero neg brigade often seem to be worse off for being diagnosed and therfore treated so slowly.
Sorry I'm questioning here because I really am so pleased for you that you've at last found a decent rheumy who treats you like an equal. I do know that is more than half the battle and I can see that rheumatologists probably depend quite a lot on patients who have read up and display a level of knowledge about their condition - or the good ones do anyhow. The trouble is that if this disease is to be caught and treated early enough it's not fair to rely on patients being with it and proactive because it takes time for us too. And what about young ones who aren't used to fighting their corner or who are simply too unwell? I guess that's why this site is so important. Tilda xx
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Thanks so much for giving this such careful thought, no need to apologise whatsoever.
The 'getting off MTX' comment was aimed at a few years down the line & I took it as a reference to the aim of drug-induced remission. I didn't address it because it's not pressing - no question of me coming off the MTX anytime soon.
I did however press ahead with the question of a clearer diagnosis for exactly the reasons you cite as I too have heard that PsA may respond to early dual treatment with Biologics. There also seems to be a question mark over whether MTX is much use at all for PsA. He started blandly saying that MTX is a cure-all but I think Lyme got mentioned then as well as later and he conceded that MTX is not the right treatment for that! So winning that mini-argument helped with getting the test for Lyme and hopefully paved the way for an ongoing process of elimination rather than complacency. I think I can foresee a future battle if I do get diagnosed with PsA (toenail currently being cultured - result coming soon!) because he seems to see it as identical to RA treatment-wise and I'd need to be convinced.
Not perfect & it would be good if I knew that he was investigating Lupus and the possibility of infection which he himself raised. He might be, but I'm not sure. Importantly, of course, he does seem interested & concerned and the next appt. is not aeons away. He'll also contact me once he's looked at today's x-rays - the promise is that if more damage has occurred since June he'll get me in for an MRI scan & review things.
I agree with you about the injustice of it all. Who manages to storm in all flags flying when first hit by illness? Not many I'm sure, but that is the most important time to get effective treatment. And then, yes, there are lots of other factors that influence how pushy you can be. So every time one of us gets 10 crucial extra minutes of attention, someone else loses it.
That's why I feel that it shouldn't just be an individual battle but I don't know of any campaigning groups that I can join.
Am really glad that the appointment went well. Your preparation was great, but I've also noted that consultants seem to treat you completely differently if someone else comes in with you.
Interesting! I think you're right there. I think the chap I saw today was a respectful individual, inclined to take his patients seriously. But it's not always like that & I've sometimes noticed what I take to be unconscious ageism and sexism (great combo!) working against me in certain situations & back up helps prevent that. Plus I suppose it's just psychology, being observed keeps us all on our toes.
Yes this is very true Earthwitch. At my last consultation there was a young probationer GP (from my surgery as it happens) present as well as the physio/ rheumy nurse and it made a big difference because he explained stuff such as the politics and how he differs from his colleagues etc so it was much more illuminating than previous appointments!
Just another example that adds to my increasing conviction that this is a self service disease! I think it really does make a huge difference if you're a pushy patient, which isn't what should happen as we should all get the same care. But it really does seem that the more you learn about your disease and show that you understand what's going on then the more you'll get back from your consultant. Maybe this is a secret way that the NHS controls costs by only doing things if the patient asks about them? In my kinder moments I reckon that the doctors are so busy that they have to assume that all's well unless you jump up and down and say it isn't, as otherwise they'd never get through the day.
And well done husband too! Great team work..... Really hope that this leads to you getti g the best possible treatment. Pollyx
I find your observations frightening as obviously they're so similar to mine and that makes the scary reality more real! I think your two theories actually gel: hefty workloads force corners to be cut, usually in ways that seem to reduce costs in the short term. But long term .....? I may need an expensive knee replacement in the not too distant future and the damage might have been minimised by prompt intervention. Instead of that I was up against penny-pinching prevarication about whether to refer me at all.
If we are right then certain types of people will get better treatment than others & as a general rule I think that is true. Life's a bit like that anyway, of course but I think when resources get scarce then real injustice is more likely.
It's so important our imput to an appointment. I go to the Nuffield in Oxford and they recently ran a series of meetings. The theme of one was managing your appointment and as a result at my next one I took the lead and it transpired that I have Fribromyalgia as well as RA. This doesn't reduce the pain or tiredness but at least now there is some treatment in sight and i now know i am not going mad!
They run courses on managing your appointment!? Blimey! That might explain a few things because I'm sure doctors in particular used to take a very dim view of assertive 'clients', but obviously it's now an accepted way of doing things if the NHS actually teach it.
So pleased you managed to clarify things. It's such a relief when nagging doubts turn out to be perfectly justified rather than a sign that we're going round the twist, especially if that means better treatment.
Ethan it makes a difference when you know whats wrong with you. I have ra/fibro, but the problem i have now is when i am suffering which one is causing the problems ra or fibro.....
Hi Sylvi, interesting. I was just happy that I wasn't imagining my mood swings and chronic fatigue. I gave up work last September thinking that if I went self employed I could manage my day and therefore my tiredness. But things went from bad to worse and I couldn't even manage working from home, i have a young doctor and he just gave me a 'are you depressed' form. I still don't know what to do. my specialist nurse has sent me a copy of the letter she sent my doctor but she is talking about low grade anti-depressants which I fear.
Ethan, fibro will make you have brain fog. It is so annoying isn't it when you can't remember things. Anti depressants are not the bad drug,they will probally give out anytrptalyne and this drug will help you sleep and function during the day. If they help you ethan why worry yourself even more about taking them. Discuss what drugs are available for you to take and look at the side effects before you take anything. Without discussing things you won't know which one to take. Sylvi.xx
I used to go to this hospital before moving north and the day care unit was excellent. A really intelligent, humane, sympathetic nurse in charge. It had improved vastly from the late 90s when you used to be seen in a cubicle and could hear the next door consultation. Great idea these meetings
Well done. It takes some courage to start to be assertive with people who, in theory, know far more than we do. But in practice I think that they are inclined to treat us all according to their process flow-charts rather than as individuals. It must be a very demanding job, so I do understand there has to be a process.
It seems we do sometimes have to jump up and down and make a fuss to get noticed. I remember being so timid at the beginning of it all. Not any more. And I always prepare for the "interview" these days.
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Thanks, I wouldn't have been so assertive twenty years ago. I might have thought I was but I was just stroppy. It's taken me so long!
And you're right, there has to be a process and they might not think much of it themselves & are probably quite relieved when patients are demanding in a reasonable way.
Well done. I found that out a few months ago when I started being more pro active ie bossy !! during my appointments. I planned what I wanted to know and took lists and my hubby came to one appointment with me. I think that the longer I have this illness the more I "fight for my rights" and push for help, the more I did the more I got! So good on u being an informed patient!! Axx
It's such a precarious balance isn't it? Very like being a parent with a "challenging child" I feel (I do see RA as a challenging child in a way?). But like you I've learned when to be assertive without being stroppy and leant all this the hard way. Perhaps, like with state schools, the NHS is right to rely on those of us who can fight our corner productively and knowledgeably? My hope is that this frees them up a bit to help those who aren't equipped to do so - especially those much younger who haven't had the chance to learn to be strategic through life school.
My fear is that if the NHS think they can cut corners for some of us they will and only those who are reasonably articulate will extract something good out of the doctors but of course I hope this fear is groundless for the most part. It reminds me of schools where the pushy parents get onto boards and lobby hard for their kids while the rest sink or swim slowly and painfully for lack of support. I don't think this means that the parents/ patients who push and stand up for themselves shouldn't - we should of course as we owe it to ourselves and our families.
Hopefully by reading blogs like this one Christina those at the beginning of their journeys or with less life experience will feel empowered to help themselves as much as they are able to. Well done for getting the balance right Christina!Tilda x
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Schools and hospitals, hospitals and schools - loads of similarities especially re. recent pressures, I so agree.
Christina, very interesting blog, as i read it they are still not sure whats wrong with you is that right. If there is that much damage to your knees in such a short space of time,why aren't they getting on a waiting list to get them put right before there is anymore damage. Your right you do get more from being assertive or taking hubby with you. My hubby always comes with me.
I have been lucky in my rheumy team. My nurse has been very good about getting my diagnosis of fibro. She had me come to see her on a thursday, my dr doesn't work at my hospital on that day. She had a good idea about what was wrong with me. There was another dr on that day. He was the expert in fibro and it was him who diagnosed me. Mind you my nurse knew what was wrong.
I am pleased that you were able to get some answers. love sylvi.xx
Glad you've got a good rheumy team, it must just make so much difference once you know who's who and have good reason to trust them.
The Rheumy did say that once he's looked at today's x-rays he'll get in touch with me about what to do next and Orthopaedics was mentioned. I didn't even hear that - I think I blocked my ears - by my husband told me. I don't know if it's the steroids I'm taking at the moment but my knees seem okay, sort of! I can walk slowly without a stick (although that is only since starting steroids and I'm coming off them soon) and I don't have much pain at all. It's a kind of 'I'll never dance again' situation ... or run, or kneel etc. but I don't want a new knee just yet if I can avoid it.
The rheumy did wiggle my legs around a bit and commented that I have more flexibility than I 'should' have, given what the x-rays show & I think I'd have to be in more pain to start thinking about knee replacement. Another thing (sorry, there's always 'another thing' to consider, it seems!) is that I had a very heavy duty bunion operation in 2010 and a metal plate inserted. Lots of my friends and family seem to think that there might be a connection between that & my current woes as there was hardly a gap between recovering from one and getting the other. The rheumy I saw today was the first medic to give that theory any credit .... he seemed to think that a foreign body - the plate - might have triggered my problems. So I'm wary of more surgery at the moment.
Actually I was just about to ask you why you had yours done i.e. how bad things got for that decision to be made but I can look back at your past blogs, can't I?
Hope new knee is behaving itself & that all is well on your side of the West Midlands,
Christina, my knee was that painful and i could hardly walk,hence the op. Hence all my troubles since. I have just put up a blog about my journey to where i am today. I'm not sure how it looks, but i did my best. It is always a good idea to take someone with you as you don't always take in what is said as more often than not your in pain. xxx
Feather I have just had a bolt of lightning moment, you're mention of the plate. About a year before I was diagnosed I slipped on some ice on the pavement and fractured my femur, then had a metal plate and screws put in..............I recovered and eventually went back to work, having been back to the fracture clinic and was once asked if I would like the plate removed? I answered 'If I don't have to, then no' but now i'm wondering if it's the cause?
I have done some haphazard internet research (is there any other kind?) into whether metals can cause inflammatory arthritis and got the impression that they can do but it is considered extremely rare. I've mentioned it to a couple of medical people before today and they've said the same thing.
The rheumy I saw today didn't say much, just nodded and said 'ah well, a foreign body ...'. We were just leaving so I couldn't follow it up but nonetheless it was a different response from those I've had so far.
Of course I'm wondering now, too! What I had previously settled on was the idea that the operation was more likely to be the culprit than the plate. So many sites I've looked at say that you might be predisposed to RA or PsA but a trigger is required to bring it out and an injury might be one of those triggers. Well, an operation is an injury, isn't it, as far as the body is concerned?
If you do look into this further, please blog about what happens!
I guess there's always a trigger but unless you can do something about that trigger ie plate removal it's all just speculation? But the foreign body comment is very interesting isn't it? I think if I'd gone into medicine I'd have found rheumatology intriguing for this reason - there are so many extraordinary and as yet unresearched aspects to it aren't there? Unlike gynaecology or cardiology where an awful lot seems to have been established already and there isn't much research left to undertake?
I'm not sure about coming off MTX if it does transpire to be RA or PsA - I think even drug induced remission usually leads to people staying on a maintanance dose at least. A lot of people seem to develop complications due to taking MTX sooner or later though.
I think it's great that you knew your stuff and I don't think we can afford to be too charitable here because these inflammatory arthritises aren't charitable after all. We may get an appointment on a good day or during a good week or even a good month and then feel absolutely lousy a short while later but have blown our chances of getting seen again anytime soon. 8 weeks is really good - my rheumy never sees anyone closer than four months apart as far as I can gauge but I was seen 6 weeks apart from telemed to one to one consultation and I found that so useful after 8 months of feeling abandoned by him.
Hopefully your consultant will have lots of results by that time and things will really be moving and progressing for you at last. Hope you sleep well after all this today. Tilda x
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2nd appointment with rheumy.....
Rheumy appointment
Discombobulated
Had my rheumy appointment. 
