I have severe RA - much joint damage in hands & feet. Good results with Rinvoq.
Yesterday, I visited rheumy for 6 mth visit. I have been suffering with swollen ankles & major chronic fatigue. Tried prednisone, B12 - no relief.
Rheumy did no physical exam. I showed her my ankles, hands & feet. She did not even listen to my heart.
Rheumy ordered bloodwork & an echocardiogram. Oh, and she recorded the visit on her iPhone.
This is at a major US university (Ivy League) medical system. What happened to the DAS exam & checking a patient's heart, etc? I left feeling, why did I even bother to go...? And she charges "big bucks" for the visit!
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Hisue
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Most of us can’t comment as your in a different healthcare system. The USA exam might be totally different to the NHS. If it helps I’ve never had any heart exam. I don’t think most UK patients do. Sorry.
Thx. Heart & lungs are at major risk with RA & RA drugs. Rinvoq is associated with "Increased risk of major cardiovascular (CV) events, such as heart attack, stroke, or death, in people 50 years and older...."
Standard RA exam should be similar in US in England. Also, no mention of team approach, PT, mental health issues, or comorbidities with this rheumy.
I’m aware of risks. But here in my experience if you went private you just might get the other stuff but not on NHS. We have shared care agreements with GP who would do stuff like a yearly monitor and that’s in addition to RA consultant and given a leaflet or two but never heard of any Rhuemy doing cardio at a check up.
In UK apart from taking your pulse at the same time as your BP…an ecg isn’t usually carried out on RA patients unless there is a particular symptom. …and a your primary care physician has had cause for concern.
Once you are settled with a rheumatologist the joints giving the most trouble are investigated & treated…..& hopefully helpful medication is prescribed. Seems to work Ok here.
tbh I’ve never had a full physical examination at appointments. Maybe early on before meds that work were found but only problem joints are checked now. Never had regular heart checks either, that’s done if there are problems and GPs refer you. If your meds are working why would you need one? I’d be glad a visit was recorded, at least you know the write up will be correct 😊
She said EKG may show if heart pumping & blood circulation are causing ankle swelling. It doesn't make sense. Drs here are very defensive - their egos don't like lay patients questioning them, much.
Because obviously what I've read as textbook RA protocol- I've never received in practice. I almost died from years of expensive, BAD doctoring in the USA.
I was curious as to what an RA exam was like in Europe.
If you don't like my question; please feel free to ignore it, rather than "poke" at me. My dr visit was no help & I'm ailing.
you didn’t ask what RA exams were like in Europe, you’re just saying what a bad appointment you feel you had, to see someone face to face here is not the norm any more let alone every six months. You’re saying you don’t know why she requested exams but then say why in the next reply. It’s confusing and people are trying to answer but querying is not poking at you, we’re just trying to make sense of what you’ve said 🤷🏻♀️ Maybe a US forum would understand it more.
If you don’t like people querying what you say when you contradict yourself then you don’t have to answer either, just ignore the replies you don’t like. Your doctor told you why she sent you for an ECG and bloods, you knew that but said you didn’t. That’s all.
I am ailing, flaring & was not given a good RA exam. I have never had any heart issues, shortness of breath or cough. Yes, there is a reason for doctors wearing stethoscopes. around their necks. I do not know why she did not listen to my heart, first, before ordering an ecg.
Your "cross-examination" is "poking". Telling me I have my answer & sending an emoji with hands up, is irritating, unkind & not helpful. You stated "we are just trying to make sense of what you said." And "maybe a US forum would be more helpful."
Well, no one else here has a problem "making sense" of my post. Condescending & dismissing a suffering RA participant is just mean-spirited & unnecessary.
Others said you’ve got your answer too, etc I don’t see you picking on what they said. You post you get responses, they’re not always going to be what you want to hear.
An ekg as you call it in the US does far more than just check the number of times per minute that your heart beats,& the result will give your doctor the information needed to decide what treatment,if any you MAY need.
You say you will now have to pay extra for the ekg…..well surely that is better than missing something vital to your well being?
My consultant does a yearly check of my heart and he was the one who picked up a murmur and echocardiogram was referred by my GP . I think it depends on your consultant and their ways rather than system guidelines unfortunately. I am now under a cardio team once a year and on heart meds.
Why should it? The USA is different to UK and ‘should’ is not ‘is’. Have you been to the USA ? What does your Rhuemy examine every 6 months? Because most of us don’t even see a Rheumy every 6 months! Do explain what you think should happen……..
In the USA , we go for blood tests, due to ("big gun meds") & to see if RA is under control, check inflammation & to see if joint damage is progressing.
Isn’t that what you had? You showed her your limbs. She ordered blood tests that’s what’s done here but you said no heart or lungs. Why ? If that isn’t part of your normal examination. Bloods indicate inflammation too. I just don’t understand now what the problem was.
This what I've researched- good RA doctors do a quick physical exam of major joints (DAS 10), skin, veins & listen to heart & lungs. Nurse takes vitals ( BP, height, weight). A good RA dr will suggest PT, OT, & ask about sleeping, depression & anxiety (RA "team" treatment).
There is more to RA doctoring than the patient pointing out swelling & fatigue & blood tests ; I could do that by e-mail or phone & just go to the lab. Why pay for a ftf visit? The dr could also suggest otc prods, creams, ice, heating pad, etc.
We pay a lot here in the US for specialists!
I was curious as to what an RA exam was like in Europe. I have severe RA.
Resarch is one thing actuality is another. They could surely not do all that every 6 months for every patient. You definitely would not get that here on the NHS. Do you have an American type of NRAS and ask if this is feasible because it might well be dependant on your level or purchased insurance. I don’t know as I’ve said previously about USA protocols but this is not done here every 6 months. I actually wouldn’t mind a phone consultation and only see a Rhuemy when I need too. Our system is different as GP would usually do some of this and take the proper action or refer on. How would the Rhuemy examine veins ? Or do a VQ scan for lungs or an MRI ? Sadly I think your research might be a bit unrealistic in the U K.
I have a friend in the US who has a similar form of RA to mine…..over the years we have both been diagnosed …our treatment has been uncannily similar….even down to being prescribed Rituximab(Called Rituxan over there,) at around the same time. In fact we have commented on how similar our treatment has been
She is fortunate to have good medical insurance ..& she does say she is very thankful that she worked for a company who had included some sort of insurance to cover her retirement years…but of course she had to contribute for years to get such cover.
Even with all the problems we experience with our NHS we are in fact extremely fortunate to be able (eventually) to get treatment we need without having to resort to taking out bank loans….unless we opt to have Private treatment to hurry things up.
I have great doctors in France. My GP who I visit about every 6 months does all the basic checks - heart, lungs, BP and so on. She will ask about weight. She always asks if I need anything else, like physio. I have foot check every couple of months, and a dermatologist once a year.
I see my rheumatologist every 6 months, but if need be can get an urgent appointment or send an email that she will answer. She reviews my 2 monthly blood tests and generally always checks joints, either by feeling them or with ultrasound. If there are any issues she will refer me to another specialist, so have been seen by pulmonology, neurology and had all sorts of imaging. She will do steroid injections into small joints there and then. But for bigger joints I get referred. Oh, and because unlike the States France has a national health service this costs me €30 (plus what I pay via tax etc).
The cardiologist is supposed to see me once a year, but Covid made that impossible. But I do have an appointment in a few months time. I have some heart issues so have had full angiogram to confirm that all is moderate.
Others I know in France do not have such a great service. However I think this is partly because it is a two-way process. I am an engaged and responsive patient and over time we have developed a good relationship. It did take some time and effort on my part, but has been worth it.
That sounds a bit extreme! But I think I could cope with living in Cannes or Nice quite happily!
But every adult in the UK should wise up,& realise that the NHS as it is today is no longer fit for purpose, & we have to realise that everybody is going to have to budget to pay more for medical treatment than the present NHI that we now pay.
It’s no good us huffing & puffing…the population here is expanding beyond belief…fewer people are training to be doctors,nurses or other clinical staff.
We now just have to accept that something needs to change soon, & ,unless we all win the lottery…….we won’t be complaining about our medical treatment…because we won’t be getting any to complain about.
Imagine that…No DMards to help many of us out of pain ,no Hip or Knee surgery to help us to walk? It really doesn’t bear thinking about does it?
I doubt it will come about easily or fast….but barring miracles, come about it must.
I agree Hisue. One would at least expect a semi-caring rheumy to touch you a some point! I imagine that in the near future visits to docs will be with robots instead of people. AI reading the data from our blood tests, xrays etc., and then "discuss" with about their findings. Gesh!
Sorry, but Britons are internationally known for having bad, rotten &/or crooked teeth (even in the royal family.) And many on this forum have lots of complaints about socialized medicine & suggest going private. "Bankrupt at 25"? Nope. Bought a house in the US at 25 (gorgeous English Tudor). US "Teenagers have a gynecologist?" What does that mean? I don't think the NRA forum is the place for uninformed, opinionated, "digs".
Anecdotals can be interesting (& often incorrect), but are not scientifically valid.
Many doctors, including mine, record consultations on a phone that are later transcribed to your notes. They don’t have time for tapping away at a computer afterwards. The letters that follow are sometimes a bit weird, but they have the basic facts so I don’t need beautiful prose.
Ordering blood-work and an echocardiogram sounds sensible precautions to me. Especially if you have risk factors other than RA, such as being obese, or high blood pressure. If your heart had been listened to and nothing heard might well have ordered one anyway, and if something had been heard that that would be logical next step.
In general it is my GP who does the routine checks like heart and lungs. I don’t expect my rheumy to do this. DAS exams ate usually done by nurses..
Here in the U.K. if your stable, you generally see either the rheumatologist or nurse every 6-12 months. I have ankylosing spondylitis rather than RA, which is also known to cause heart and lung issues, which I unfortunately have both. Many countries do yearly echo’s for AS patients, yet here in the U.K. they don’t. When I enquired with the AS charity, they said doing so was picking up incidental findings, which were not a siding an issue, and you therefore have to question if treatment is the right thing, if it’s causing no issue. It was my gp who investigated the lung problem, when I became short of breath, and during tests they found my heart was enlarged and was potentially the read on my heart rate would hit 180 on a gentle walk. I now see a respiratory specialist re my pulmonary fibrosis, my rheumatologist will just ask in passing, how these conditions are, but he never sounds me, which I’m fine with, as I have specialists with more knowledge in that field.
I have contact 6 monthly with my RA dept. Not necessarily going in but can be by telephone or video. That's because I'm in remission. However if I have a problem I can phone or email them. I also have the app Living With . I do weekly tasks like record how I'm feeling both physically and mentally. A body chart to click on any changes Loads more stuff. The hospital dept sees this and would get in touch if they want more information. I'm in UK South West
Well, I attend what is considered to be a *good* teaching hospital.
I was first diagnosed by my GP in 2014. I told him my problem. He did bloods and squeezed my hands to see if the hurt - they did and did a fast track referral. I have since changed GP practice and have never spoken to a doctor about my inflammatory arthritis. They do an annual blood test but that’s it - they will phone to offer statins but that’s it and I don’t want them.
Anyway, back to 2014/5 I got to see a rheumatologist. I was prescribed a three month reducing course of steroids and 200mcg a day of hydroxychloroquine. Return visit in a year.
My husband was an optometrist so I knew all about the dangers of hydroxy and had a baseline OCT scan done.
I had another OCT a week before my next rheumy appointment. After that I saw someone more or less annually until covid. I have my own OCT scans done and take the print outs along with me.
My consultations were nothing more than blood pressure being taken while the healthcare assistant chatted away to me, then being weighed and height measured with my shoes and clothes on - I noticed earlier this week I was 2 cms taller according to the last consultants letter I received. I’m not but if I ever turn up wearing shows with thinner soles it will look as if I am shrinking! Not good. So then I meet with a rheumatologist I have never seen before. ‘How am I?.’ A bit of a look at my hands and that’s it. No mention about feet or any other body parts 🤔
At one point one of the rheumatologists I saw was talking about stopping the hydroxy. I met someone else who had seen him and he was trying to stop hers too! Last time I was seen in 2021 after I fractured my sacrum (I had emailed to requested an appointment) I asked if I was to continue with hydroxy and was told I had to stay on them.
I imagine if I hadn’t contacted them in 2021 I still wouldn’t have seen anyone by now. I still haven’t had the 2022 follow up appointment mentioned in the copy of the letter to my GP.
So, I figure on the scale of RD I’m pretty low and not worth bothering about although I know someone who is way up on the scale who still isn’t being seen either.
I don’t think rheumatology is a very *glamorous* field to work in - and it would appear that in the U.K. rheumatologists are in short supply and most of them are run off their feet.
Your account is interesting to me as I'm beginning to think that regular RA Consultations are now a thing of the past, unless you're RA is not yet under control.
We all know that there are higher risks of developing co-mormidities alongside RA. These are more likely to go undetected if we don't see a consultant periodically, which puts us at high risk unless we know what to look out for.
Like you, I developed RA in 2013 and until that point had been relatively fit. My medical knowledge isn't great, so I've no idea what I should be looking for re symptoms of co-morbidities.
I do have symptoms from COVID ie long COVID issues which are lingering, but maybe these are now linked to my RA?
With the lack of Consultant support that's now evident for RA patients, I would really welcome some sort of "non medical/ plain English) guide as to the kind of risks we face and what we should be looking out for. I've not seen this anywhere - does anyone know of such a thing?
With COVID impacting all our health services, I've lost confidence in our NHS Service. I can't afford private treatment either. So self help, although not ideal, is the only option left for me and I'm sure I'm not alone. There's never been a time when the support of NRAS is more needed, but more government funding is needed to help them to help people like me!
Just go to NRAS website or Versus Arthritus both of which do booklets, info on meds etc.
PS Don’t forget here it’s shared care so your GP will be responsible for care too. They check once a year which I think is a waste of time but I expect they get money for it.
I realise my GP has responsibilities too. I do receive a letter every now and then, reminding me to do my blood tests, but I have to wait three weeks for an appointment to see the nurse. Then I hear nothing, until the next reminder. No annual health check since before COVID.
If I ever do have any concerns, I can't get an appointment to speak with a GP. They are released from 8.00am for the day. They're booked up by 8.30am. That's it, you're just told to try again the next day. There's no advanced bookings other than that. It's pretty hopeless. I gave up trying.
Nope it’s exactly the same here. Lines open at 8am but Econsult is the way to go. A wait of 3 weeks is normal too. I joined Benenden as that is only £12 a month and same day access by phone. However I’ve been seen for the annual review and for shingles last year so it sort of works.
Have you checked if your hospital uses Swiftqueue for blood tests?
You can check on their website. I have used it for quite a while now,& I can usually get a blood test within 24hrs & whoever requested that test (you need a blood test form of course)& your GP will usually have the result in24hrs.
That's useful to know, thank you. I haven't heard of that. Then again, I haven't been to the hospital for five years and my bloods are tested via my GP. I believe they have an arrangement with Barnsley Hospital (who are no longer my RA support hospital) to perform the tests and results are delivered back to the GP in 2 to 3 days.
Maybe it's time that the whole system of Hospital/GP care for RA patients in the NHS is reviewed and made more streamlined, considering the reduced resources. All I know is, it's not working for me and it feels broken where I live. It's pretending to be something its not, and that's just the reality of so many things nowadays.
The NICE guidelines used to set the standard of care we came to expect but now, the standards are all over the place because we never recovered from the COVID shut down. That's the new reality and I've accepted that now.
Those who can afford the alternative private option do, those that can't afford any alternative just do the best with what's available. I'm very grateful to NRAS and all the support they offer.
The. GP practice. I am with now seems to do exactly what it feels like. They actually questioned why I didn’t have my blood test with them. When I explained by the time I made the appointment and got the result. I was probably better from the malady the blood test was to supposedto investigate. You are right it’s DIY all the way these days isn’t it.?
You and others will hopefully be interested to know that this year we are working on a 'Managing Cardiovascular Risks in RA' module for SMILE - our e-learning platform. You are right about the need for NRAS but 'self-help' is essential if you live with a long-term condition like RA - we call it supported self-management, because it's about learning and acquiring skills to understand and manage your RA day to day to the best of your ability to improve your long term health outcomes and this is done with the right support which could be your rheumatology team, NRAS, your family, your work colleagues etc., from the right person/org/team at the right time. If you haven't registered for SMILE, please can I recommend that you do so and watch all the modules, you will learn a lot. nras.org.uk/smile
Part of managing your disease well is about learning how to mitigate co-morbidities like CVD, anxiety & depression, osteoporosis, diabetes, etc. and a big part of what NRAS is here for is to help and support you to do that. Our publications can help too. Don't hesitate to contact us for more information. Best wishes
They can do that here too…but most patients know , & as in some areas getting on a Doctor…or especially a Dentist’s list is nigh on impossible …so people put up & shut up
My rheumatologist just talks and prescribes. The medical doctor does the other stuff. She listened because she is sending you for further testing. Be sure to follow up for the results. Your doctor may have not been feeling up to par herself that day. Hang in there.
I'm in the UK. My rheumatologist perhaps looks at my hands but nothing else. She does ask about my symptoms though. I only see my rheumatologist about once every 2 years but I do see my rheumy nurse every 6 months & she does the full DAS exam every time. No heart & lungs check though,
Hi A….Yes talking is a great way to progress …my rheumatologist is a great talker….that is why…..having been my rheumatologist for 18 years my RA is really well controlled & I don’t have to perform acrobatics for my rheumy to see how my joints are doing.
Hi , You say you tried prednisone and B12 did you try these yourself or were they .prescribed? Prednisolone can cause ankle swelling due to fluid retention.
I am a bit surprised the doctor didn't examine your heart or listen to your chest when you had ankle swelling. You didn’t say if you are short of breath. The blood tests sound very sensible, they will help decide why you are fatigued as they can check out if you are anaemic, or have problem with your liver or kidneys which can be side effect of rivok. It is a bit surprising that she didn’t do a chest X-ray but an echocardiogram will be helpful to decide what is causing the ankle swelling and fatigue as it will tell you if it is pumping properly.
In USA you will probably get the echocardiogram quickly, in U.K. there is sometimes a bit of a wait. I am sure she will review you when she gets all the results and hopefully get you sorted out soon.
Hi- Yes, my rheumy prescribed B12 & prednisone. Neither helped. Also, I have never had cardiac or lung problems- ecg results came back today- heart is fine. I have lost faith in the "new breed" of American doctors. Like lawyers, they get paid whether they help you or not. 💰Thanks for your input.
I live in the US and I have seen many docs here. A US versus UK comparison is difficult unless you've lived with both. One thing I believe is highly likely in both systems: there is a large spectrum of abilities. Going to a prestigious institution definitely increases the odds that the doc will be excellent but is not a sure-fire guarantee. It required 4 (four!) rheumatologists for me to get the right diagnosis. The one who finally did was at a hospital that Specializes in joint disease, but so was another who admitted that she didn't know what I had! Granted, my disease (MCTD) is rare and many rheumatologists do not think of it. Anyway, it's best to ask questions and get full explanations for anything you don't understand and not be shy or intimidated. And just like differences in tolerances to different medications, some doctors are simply not right for some patients and vice versa. And by the way, if a doctor does not like a patient, they are required to find another one for you; you cannot just be abandoned.
I am copying and pasting a reply that I just made a few seconds ago because it posted in the wrong place. The repeat is below:
I live in the US and I have seen many docs here. A US versus UK comparison is difficult unless you've lived with both. One thing I believe is highly likely in both systems: there is a large spectrum of abilities. Going to a prestigious institution definitely increases the odds that the doc will be excellent but is not a sure-fire guarantee. It required 4 (four!) rheumatologists for me to get the right diagnosis. The one who finally did was at a hospital that Specializes in joint disease, but so was another who admitted that she didn't know what I had! Granted, my disease (MCTD) is rare and many rheumatologists do not think of it. Anyway, it's best to ask questions and get full explanations for anything you don't understand and not be shy or intimidated. And just like differences in tolerances to different medications, some doctors are simply not right for some patients and vice versa. And by the way, if a doctor does not like a patient, they are required to find another one for you; you cannot just be abandoned.
Thanks for your insight. I, too, have learned about the "spectrum" of medical expertise, the "hard way".
Affirmative action , on-line degrees & other USA programs have "waved" people thru STEM degrees, who never would have made it through, before. I've had medical professionals who don't even know the metric system.
And mediocre drs who just chase money--- 10 years ago, after many medicines failed to help my severe RA, I asked the rheumy if I could go on a JAK (8-10,000$/mth for 30 pills) & he asked if I could afford it? I had RX insurance - but it only covered 80% -so no, I couldn't afford the copay- and RA continued to incapacitate me (as did the dmards & biologics).
I moved 10 yrs later & switched to a new rheumy- was given the same answer about a JAK- instead she prescribed Rituxan infusion ($35,000 for 7hr infusion, but, quickly covered 100% by my hospital insurance)- which rendered me bed-ridden for 6 mths (adverse reaction).
A kind PharmD looked at my medical records & called me & asked why I wasn't getting the JAK I asked for by applying to the manufacturer for patient assistance? I never heard of it- this pharmacist intervened for me - got me on the program- & I am now in partial recovery on the JAK.
The rheumies were too lazy to do the paperwork for me. So I suffered for 10 yrs, and experienced much pain, bone damage because of their laziness & neglect.
Just frightening.
And I am "old school", STEM educated & have good medical insurance.
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My teacup is heavy :(
well not been on for a bit now 
2 nd appointment for rheumy first denied just physical exam push pull me type touch toes should there b bloods taken readings xrays whatever
seropositive RA 8 yrs ago, now seronegative?
