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vastly different perspective of different rheumatologist: so am I terribly controlled after all?

hello all. I don’t know what to make of my face to face appointment yesterday and I feel rather emotional.

It’s been well over two years since I saw a rheumatologist face to face - or indeed any kind of hospital medic. All that time my lovely learned consultant told me that although the arthritis was slowly burning through all my dip joints and deforming them ( apparently I have something more typical of psoriasic arthritis.) I was essentially “on the edge of control” and although I am stuck on pred he saw no desperate urgency. And so I have muddled on working full time and just accepting that this is how it is.

Yesterday’s guy was very brusque and matter of fact. He took one look at me and announced that the disease was very active indeed. He asked my what level I thought my disease was at and when I said a 3 or 4 ( already upped in my mind due to his previous comments) he said he would have put the number at much higher.

Don’t get me wrong it’s good that he wants to fix things but I feel very emotional about all this and worried now. How could he have such a different view of things? And does this mean I have been under served all this time by my previous beloved consultant? It’s also very unnerving to be so starkly reminded of just “how ill” I am.

I was really tearful after the appointment and would welcome any thoughts or experiences from my fellow arthritis sufferers.

Bon

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janmary13 days ago

I have had similar experiences- my usual cons putting a lot of my difficulties down to OA , then another consultant called by the nurse (at an appt with her) immediately saying my RA was acute and generalised.

I suppose many factors are involved - I know I am often too keen to underestimate my level when asked that ridiculous question about where are you on 1 to 10. My inflammatory markers are never high. I never want to be a nuisance or a moaner.

Then there are pressures on docs and they have different attitudes and diagnosis is not an exact science in rheumatology - conditions overlap and patients respond differently.

I’m not being much help I know - trying to work it out myself!

Bon1 in reply to janmary13 days ago

thank you so much for your reply. Best wishes to you x

oldtimer213 days ago

So much of the assessment is subjective, that is, based on how someone 'feels' rather than based on evidence. If you had been seen after the specialist had seen someone much worse affected, would they have though (in comparison) that you were not as badly affectly?

I've found over the many years that I've been attending outpatients that being seen early in the day I have a much better experience with more empathy and explanation. Towards the end of the clinic there is often a rushed appointment with the clinician ignoring much of what I want to ask about.

I would not read too much into the opinion given. One person's 'severe' may be anothers 'well managed'. You are the person with the most experience of your body, how it works, your symptoms and signs. If, however, the clinician is offering you a change in treatment, then you need to consider that in the same way you would evaluate any change in medication, weighing the advantages and disadvantages for YOU.

Bon1 in reply to oldtimer213 days ago

interesting take old timer. I was seen at 4 and the clinic was running late…

Dan13rheumatoid in reply to oldtimer212 days ago

very true. Differs greatly from nurse specialists also, I have been offered steroid injections one visit but not the next when condition was worse and backed up by blood work.

Bon1 in reply to Dan13rheumatoid12 days ago

so hard for patients to cope psychologically with this degree of difference from medical professionals when we rely on them for some sense of certainty…

July23 in reply to Dan13rheumatoid11 days ago

Since Covid steriod injections have been offered much less as the research was linked to severity of infection. Their use is now considered more risky.

CripLady13 days ago

Morning. I always find Rheumatology appointments very emotionally draining. We are so used to ‘getting on with it’, and the upfront confrontation of our realities can be disconcerting.

I would welcome a fresh pair of eyes. Hopefully this new input will help, though I do appreciate the upset. Take care.

I note that you haven’t seen anyone for 2 years. That may well be a significant factor.

Bon1 in reply to CripLady13 days ago

thanks CL. I actually realised it’s more than three years! Best of luck to you

CripLady in reply to Bon112 days ago

Yeah, I had a Rheumatology face to face a couple of weeks ago; 3 years since my last one (Covid)..

Bon1 in reply to CripLady11 days ago

so long! This feels all wrong now that I reflect on it.

CripLady in reply to Bon111 days ago

It was Coviid, then clearing backlogs. Could well explain the disparity in your consultations… it’s a long time if things have been getting steadily worse. Fortunately I have been stable and have improved in fact after leaving work…

Bon1 in reply to CripLady10 days ago

that’s good to hear. Long May that continue!

CripLady in reply to Bon110 days ago

Thank you 💐

Katie-Mag in reply to CripLady12 days ago

Good point about ‘getting on with it’ and trying to put RA to the back of our minds. Struck home with me 😊.

sunnyweek13 days ago

We can plod on and not really notice too much any small changes, or maybe ignore them and carry on (not saying you have). Maybe over two years things are a little different for you. New eyes can be good.

I had the same consultant for many years and trusted him, now I can see some things maybe could have been done with him that weren't discussed, ie taping off prednisolone when he wanted me to stay on a 5mg permanently.

It can be unnerving when we are faced with our condition, its happened to me.

Consultants can vary and really now it depends on how you feel and if you would consider different treatment.

Bon1 in reply to sunnyweek13 days ago

very true Sw. I feel I was sort of abandoned by my rheum team but then again I didn’t help because I just said “all good” when I had phone appointment! Maybe if I had pushed more..🤷‍♀️ . Thanks for your reply x

sunnyweek13 days ago

I think more than a few of us do that, you are not alone, I can't wait to get out of the room, and if a phone call, have to consider will they call me in and the effort that takes. I do hope though you can make a decision that's best for you, if he has suggested anything.

Deeb176413 days ago

I remember one of my appoywhere I was frustrated with everything and mine said” this is it for now” so no changes to meds and I had to accept the illness I had.

I was very emotional afterwards as always look for a positive and this did not make me feel that.

However it did make me push when things go astray I don’t sit and wait I push for what I think I need and my GP thank god backs me if he agrees!

Bon1 in reply to Deeb176413 days ago

I wish I had pushed more now. I think I just dealt with it and thought that’s what I need to do! Thanks so much for your reply

AgedCrone13 days ago

if you are getting treatment that is helping you now I wouldn’t worry.

Even highly experienced rheumatologists aren’t above presenting their ideas as better than your previous rheumy……so keep an eye on how you feel things are going & if you aren’t happy,have a word with your rheumy nurse…she will be able to move things along for you.

Bon1 in reply to AgedCrone13 days ago

good advice AC. There is one rheum nurse ther who really knows her onions! I think the problem might be that I’ve just been too “oh I’m fine” about everything and without anyone seeing me I. Person they just happily went along with that. X

AgedCrone in reply to Bon113 days ago

Just keep an eye on things & if you can manage to stay off the Pred I think that is a bonus. Luckily it didn’t suit me & I’m sure that is why I am only just developing osteoporosis in my 80’s!

helixhelix13 days ago

Was your previosu rheumy of a certain age? And have you tried other treatments apart from pred? Did you ever have a discussion about what the treatment target was?

Practice has changed a lot in the 12 years since I have had this, and my current 40-something rheumy aims to keep her patients as inencumbered by the disease as possible. She is also good in that she pays little attention to my inflammation markers, but feels my joints. When I first met her I found her far less sympathetic than previous touch-feely rheumy, and wasn’t sure I would be able to deal with her. But in terms of the actual medical care she provides, it’ great. So I put up with her brusque’ness and talking at 100 miles and hour.

I’m sorry to say this, as it’s horribly upsettimg, but I don’t feel you have been well served. 3 years with no F2F for a person on pred is not the standard of care you should get.

How did the consultant leave things? As upsetting you and not proposing a better treatment plan is even worse! Will you be having scans to check for inflammation and damage? Try to look forward and push for more effective treatment,

Bon1 in reply to helixhelix13 days ago

very incisive HH. Yep my consultant has retired now (at least from nhs practice) . It was weird- at first everyone was determined to get me off pred and then it all just went quiet! He proposed a JAK. Which I’m very happy aboit. I just feel regret about all the time that’s slipped away with no one taking and active role in my care. Thanks for your reply! X

KittyJ13 days ago

sorry if this sounds harsh, it’s not meant to 😊but I think you need to not dwell on what has been, yes you shouldn’t have been left but also you have to take some responsibility for that because you were telling them you were doing ok. I think you’ve learnt a lesson here to always think about how you really are and tell it straight at appointments and get in touch with them if things aren’t ok. The trouble is that we get used to how we feel and deal with it, with a long time between appointments and seeing two different consultants you may well have deteriorated but not noticed it yourself as you have just got on with things. Try to look forward and to the fact you’re getting put on meds that will now help and will hopefully get you off pred. I hope you get your new meds quickly and are Soon back here telling us how good you feel 🤞🏻Good luck🍀

Bon1 in reply to KittyJ13 days ago

thank you Kitty i appreciate your good wishes and sensible take on things. Hoping for new and good stuff ahead!! X

Mmrr12 days ago

It sounds as if you have not had the best of care over the past few years, but the focus must be on moving forward and getting the best care for you now. We do have a duty to let the medical staff know how we really are too, they base their care around our feedback. Medicine isn't an exact science, much of it is down to opinion and what is thought to be the best approach to treatment now (what is fashionable), so a younger Dr is most likely to have different views on treatment than an older one.

I recently changed rheumatologists as I was not happy with the treatment being offered (or not in my case). My new rheumatologist has a much different approach, re MRId me and changed my meds. Had I stayed with the old one goodness knows what state I'd be in.

Ask lots of questions, take the best care on offer.

Bon1 in reply to Mmrr12 days ago

dear Mmrr. Thanks for this sage advice - although I haven’t posted your fortitude and ability to advocate for yourself in recent months has been an inspiration. I suppose I am baffled at how I could have allowed myself to think that things were fine when I now realize just how far from fine they actually are!!

Then again I remember when I went to the breast clinic after finding a lump and said to the sonographer that I was astounded I hadn’t noticed it before - she said people regularly walk round with all sorts of very obvious issues that they are oblivious to!

Mmrr in reply to Bon112 days ago

It is so easy not to see the obvious, I was well aware of my recent growing abscess but didn't do anything about it, until there was no option.I do hope your new rheumatologist gets on top of things for you.

Bon1 in reply to Mmrr12 days ago

😊

Jackie194712 days ago

I had a similar experience way back now that left me in tears. I mentioned this to my then GP and she said put in a complaint which I did. Another rheumatologist took on the investigation and he apologised for his actions. The best outcome the investigating rhuematogist offered to take me on and I stayed with her for 10 years until she retired. Never put up with second best as we deserve the best care on offer

Mmrr in reply to Jackie194712 days ago

Here here

Bon1 in reply to Jackie194712 days ago

thank you Jackie. I really need to keep reminding myself of this!

priss58 in reply to Jackie194712 days ago

Absolutely. I had a similar experience, and after talking to the best GP at practice, I finally got to see a new consultant who went right back to the beginning and redid lots of tests. Good luck x

Leics12 days ago

I think being told at a F2F that things had progressed and your disease isn’t controlled and warrants further treatment is potentially a good thing moving forward. In some respects being faced with how things actually are and not just ‘getting on with it’ has perhaps done you a favour in the long run. I know how upsetting this can be and I’m not surprised you were very upset and tearful afterwards. I hope in a few days you’ll come to terms with the things that were said at your appointment and look forward to being a better managed you. I’ve had appointments F2F with a doc who told me I don’t have RA at all and I shouldn’t be on treatment even though I could barely walk and saw them in absolute agony so there are good and bad appointments and I don’t focus on bad care anymore. As others have said you need to perhaps be more honest with yourself and not just get in the habit of saying you’re fine if your not but don’t beat yourself up about it it’s something we all do. Even if rheumatology isn’t an exact science any doc worth his salt should know the nature of someone’s disease control by asking the right questions. We get too used unfortunately to telling people we are fine and I detest going to the docs because I’ve seen some bad ones in my time who have made me feel like a fraud. Thankfully I have an excellent rheumy who I trust and my care is really good now.

Bon1 in reply to Leics12 days ago

thank you so much for this kind reply. Have a good Sunday. X

Leics in reply to Bon112 days ago

You too Bon1 I hope you’re not as upset as you were. Coming to terms with another perspective with your disease control may take some time to digest but you’ll bounce back Im sure. Take your time take stock and when you’re ready move forward. Try to focus on the positives as I bet you’ve been kidding yourself that things were ok for a while now and if the new plan helps you to make your working and home life easier that’s got to be good. Keep us updated how you’re doing.

Bon1 in reply to Leics12 days ago

thank you x

Maureengibson12 days ago

I’m sorry you were upset by your appointment. I agree with Kitty that I think you need to look forward and not back, not comparing one rheumatologist against the other. Having gone 3yrs with no F2F, it sounds like you have been slowly getting worse, despite telling them over the phone you are fine. They can only go on what they are told, and with reduced numbers of appointments being F2F, to prevent overfilled waiting rooms, they have to prioritise on those reporting issues. He sounds like a good rheumatologist who has concerns for the level you’re running at, and sounds like he’s offering treatment to get back on top of things. Hopefully the Jak will get things better controlled, and day to day life will improve for you. I think the lesson learned is to be brutally honest about how your feeling, what your joints are like, and how your RA is impacting your day to day life compared to your last discussion with the team. I would take this as a positive, that things are going to get better, now they can see how you really are. Had this been another phone consultation I suspect you would have still said your fine, and be struggling on. If things don’t improve on the new meds lift the phone and tell them. Hope things get easier for you now. 🤗

Bon1 in reply to Maureengibson12 days ago

thank you Maureen. That’s the scary thing! I definitely would have said I was fine 😂. I just need to control my anxiety now until my blood test on the 6th Feb. have a great day. X

Maureengibson in reply to Bon112 days ago

🤗

Cavlover12 days ago

Have posted this before but know what you mean. I was told by my consultant a year ago that the pain I was experiencing was chronic pain syndrome (I was usually very stoic he said) that occurs in those who have had RA for many years (60) and it was due to a recent bereavement. This is despite my seeing the specialist nurse a month before who felt that I was flaring despite the methotrexate having worked for a couple of years and rushed me an appointment to be considered for biologics; he based it on my joint pain and didn't worry about my blood results but the consultant did as they were low so put me on amytripiline which helped me sleep a bit better but did nothing else. I was quite cross and upset so persisted at the appointment as my elbows were really sore and he agreed in the end to a steroid injection by ultrasound in the worse one as that would show inflammation (I had had a us on my hands and wrists in clinic but that showed nothing so he said my RA was inactive based on that as well) and also some physio for my elbows as that would help. Took 4 months to have the injection. The ultrasonographer would only do it if there was inflammation he said but when he looked he was very happy to do it. The physio was lovely and improved one elbow but she was convinced it wasn't chronic pain syndrome. A registrar then spoke to me a few months later at my 6 month follow up and said 'have you ever considered biologics' as I would be a good candidate for them! Eventually a year later almost to the day I saw the consultant I have had my first Imraldi dose. Saw my specialist nurse in December (one year after he put me forward for biologics ) and told him that I was told it was chronic pain syndrome and how upset I was and he said he wasn't surprised I was cross as I knew my own body. Just hope it is worth the wait as have had a rotten few months waiting to get there as there were delays with my blood tests then Christmas. Sorry about the long story but even 'experienced' patients find it hard to get anywhere even if they persist in saying I know there is something wrong.

Bon1 in reply to Cavlover12 days ago

thank you Cavlover. This is true! I’m fairly sure I was saying that things weren’t right but maybe not being properly heard. Have a great Sunday x

zen412 days ago

Sorry you have been feeling upset. I understand how you I too have had some incredibly abrasive specialists over the years and their bedside manner is not the best. In this case he may well be correct even if he could have explained in a better way. 2-3 years is a long time and much can happen. We all have different experiences of RA and different needs and my own RA progressed all the time without me having a huge amount of pain or flare ups. I could only tell by my joints losing their flexibility and by xrays and scans and the inflammatory response in blood tests. That's not to say that I haven't had extreme flare ups and acute pain

I would agree that a more targeted medication would be far better than steroids which are useful in a flare ups but should then be reviewed and a better treatment offered. They are very bad for thinning bones and causing osteoporosis. Maybe you need some xrays/scans and a blood test and then an appointment with the new consultant to see what he can offer you. You did say the dip joints were being eroded and as far as possible you need the RA slowed down and preferably in remission if possible. Having had RA fot 50 years I understand the need to be assertive but polite when asking for help. If you don't speak you don't get! Good Luck

Bon1 in reply to zen412 days ago

thank you so much Z4. It certainly is a marathon not a sprint! Your advice is very clear and sensible. Have a great Sunday x

wilbertjellyfish12 days ago

These situations are always difficult...and as a professional on the other side of the table at times (am a vet) I always try to remember they are human..with different experiences and opinions. This is the reason I would always advocate for asking questions and not taking everything a DR says at face value.

Slight aside but I refused induction with my first three children (13,14+15 days overdue) simply because the NHS books you Ina a day that suits them..not you or your baby.

It's good this new guy is looking at things differently, he's looking at you with fresh eyes and wanting to help

.. however ask questions. I appreciate yesterday you were a bit ambushed. Its your body and you can ask for explanations of why he wants to try this drug or that etc.

Hope it helps.

Bon1 in reply to wilbertjellyfish12 days ago

thank you so much WJ. V interesting to hear a perspective from the “other side” 😁. I am starting to see it all as a potential positive thanks to the great input from nras folks. X

Thingybob12 days ago

My rheumy once told me that sometimes patients get 'used to ' a certain level of pain, discomfort and etc with long term conditions, and then accept that as 'the norm' for them . She said its important not to fall into that trap and that if something bothers you then its important to deal with it if possible. A fresh pair of eyes may have a higher level of expectation for you and your condition.....not a bad thing really ?

Bon1 in reply to Thingybob12 days ago

thank you TB. You’re right - the consultant basically told me I had got used to being in pain! So I’m retrospectively feeling sorry for myself today 😂.

smilelines12 days ago

I think it is terrible that doctor’s opinions differ so greatly. And then if I question my doctor she gets quite aggressive with her responses. Hope you can make sense of all of this and become confident in your new doctor’s treatment plan.

Bon1 in reply to smilelines12 days ago

dear Smiles, that’s not good to hear…it’s a shame that you feel you can’t speak freely to your doc. Thank you for your kind words and I hope you had a good weekend. X

Hollyhock12312 days ago

Hi, I had the same consultant from diagnosis until we relocated out of area, so 13 yrs in total. I always trusted her treatment plan. When I first met my new consultant he basically said that how my condition had been managed was in his eyes not satisfactory enough. Bit of a shock! I had seen my previous consultant when things weren’t good and over the years had had several steroid injections ‘to help me manage’. I have to take some responsibility because I just ‘accepted’ my diagnosis and treatment , then continued to bury my head. I was in fact in denial. It was only on seeing my new consultant and the shock of what he said that I begin to investigate the condition and support groups like this myself. I was also fortunate that my new consultant was active on the RA research front so seemed to be more up to date, and I became part of a research project through the hospital. I suppose that opportunity also gave me regular questions and scales to measure myself by. He put me straight onto biologics, and weened me off prednisone and stopped sulphasalazine. Then I felt the difference! As others have said, we can’t look back, only forward. Having relocated again during lockdown 3 I have a new team to get to know. I’m currently between consultants as my new nominated one has left and they are yet to replace her. I make use of the RA nurse team a lot now, and have learnt before any appointment to write down a summary of any ups and downs, however minor, before any appointment. I also speak to the nurses if anything else crops up, not RA related, just so it’s registered with them.

Good luck with your new team, and I hope your new regime helps you.

Bon1 in reply to Hollyhock12312 days ago

wow Hollyhock that sounds similar to my situation. I hope I can follow your lead and get a bit more in the driving seat in terms of my condition. I think the pandemic has knocked me a lot in terms of my confidence and expectations. Thank you for your input. X

lindyloo2018 in reply to Hollyhock1239 days ago

glad biologics worked for you. which one are you taking and do you have to take methotrexate with it ? many thanks

Hollyhock123 in reply to lindyloo20188 days ago

Hi, I’m fortunate that the first biologic I was put on seems to be effective. I’m on benepali /etanercept and on mtx injections (17.5mg). I was on mtx tablets for nearly 20yrs and recently switched to injections.

Matelot12311 days ago

like Bon, have not seen my rheumatologist for over 2 years. At my last appointment i was also informed of my " new diagnosis" which is Psoriatic arthritis, altered from my original diagnosis of Ankylosing arthritis. That diagnosis was made by a Professor over 20 years ago. At my last appointment the joints in my fingers were checked for swelling and I was informed I am in remission! This is in spite of over 20 surgical procedures over the same period of time. I feel as if, possibly because of may age, I have been written off and abandoned by the medical profession. I cannot write anymore as I am so upset. Jack, not my real name of course.

Cavlover in reply to Matelot12311 days ago

I have posted a reply to Bon in which I have said similar things. I came away from my appointment in January 2022 feeling the same. He said that because my fingers didn't show any inflammation on an ultrasound and my blood markers were low, the pain I was experiencing was chronic pain syndrome caused by the brain becoming more sensitive to pain over the years, which he has seen in older long term patients, plus general age related wear and tear. In other words, because I was getting old. I even had a previous consultant take me off all my meds in my 50s and tell me I was too old to flare again, but I did 7 years later.

Bon1 in reply to Matelot12311 days ago

that is so upsetting M123. Is there any way you can push for a more proactive approach? I really feel I need to after this.

Storms575 days ago

I like you am concerned about my care had a one to one by zoom.. didn't say all I wanted felt rushed. He have offered me rinvoq a jak ..concerned about the side effects . Been on number of meds on predisilone 10 mg inflammation levels are 110. My own gp raised the pred because my levels so high.

Bon1 in reply to Storms575 days ago

dear Storm, I totally understand what you mean about not saying what you wanted to say. I’ve been thinking about things to say and ask all week. I guess i feel angry with myself for having been in denial about my situation for so long too! I hope the Jak works for you.

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