My Rheumatologist recently retired and the new one said she likes to take everyone back to ground zero in terms of DMARDS and start afresh and diagnose from scratch. My GP said this is now quite common when changing Consultants.Has anyone else heard of this approach?
Also anyone any experience good or bad of The Freeman Hospital in Newcastle or James Cook Hospital in Tees Valley?
Thank you x
Hello. How on earth do you diagnose someone from scratch who's several years into treatment? Does she mean stopping medication that might be controlling someone's disease and seeing what happens?
Hi rmros, yes exactly that.She said my liver enzymes and scan plus sugar and cholesterol were all concerning, plus infarct on tibia and cuboid bones. All caused by Rinvoq, so this plus my age (62) meant she had to stop it. But in any event her preference with new patients (as in new to her) is to stop everything and start from scratch.
My GP said she is hearing similar stories from other patients across a range of North East hospitals so I'm wondering if there are some new NICE guidelines or if it's just a new trend with some Rheumatologists.
In my case Rinvoq was stopped in early September and Rheumatologist is going to phone me mid November to see how I'm getting on - my bloods that were elevated have all returned to within ref. range which is great but ESR and CRP are increased. The xrays she ordered showed "severe deterioration in hands and feet" and that's being on DMARDs, so goodness knows what's going to happen now I'm off them. Pain and mobility are much worse (big surprise)
Oh and the other troubling thing is that she has diagnosed hypermobility - seen 4 other Rheumatologists over the years plus 11 Trainees in an RA diagnostic teaching session and not one of them has mentioned hypermobility. I am deeply sceptical of this Rheumatologist's approach.
I'm speaking to my GP next week and will be moving to a different hospital.
Goodness me that is very concerning. Stopping medication because it isn’t working or is harming you is one thing, stopping it so she can experiment with her own hypotheses is another. I’m glad you’re moving to another hospital, I’d be out the door too. I will be interested to hear if anyone else has experienced this. It sounds utterly mad to me.
Thank you, you've confirmed my thinking which is reassuring, I thought maybe I was over reacting initially.My previous Rheumatologist was, in my experience an absolute legend and I trusted him 200% so I knew it would be hard with a new one at first, but I didn't expect his diagnosis and treatment plans to be dismantled and treated with such contempt.
Time to move on and I'll keep you posted
As your pain and mobility are much worse, would it be worth contacting her to say so and ask for an earlier appointment to discuss treatment going forward? I wouldn't want to wait until November but she might have a treatment plan in mind depending on how you are after stopping medication and she might assume that you're doing well/ok if you don't tell her otherwise.
Hi I know it's common in other departments I'd keep an open mind
There might be
Different approaches and opinion so etc
Hopefully just as good or better
Thanks, it's not something I've come across before so interesting to know it happens in other areas, it's deeply worrying for me as I have to work full time and without DMARDs I'm worried the RA will go on the rampage again. I agree about different approaches and open to options, Rinvoq wasn't without it's issues and side effects, but I don't feel taking away all DMARDs and stuffing me with morphine for 3 months whilst she "sees" what happens is a very helpful approach.
Hope goes ok and treatments wise as well for you
I don’t understand this ‘starting again from scratch ‘ thing, and how it is to the benefit of the patient. I suppose it eliminates wrong diagnosis.
I agree about wrong diagnosis and always open to new options etc. I find it odd though that 4 Rheumatologists in Spain and UK all diagnosed RA
Multiple GPs agree (plus Podiatrists and Physios
But then this one comes along and casts doubt on everything.
What really worried me was when I told her that in summer I'd volunteered at local hospital and 11 trainee Rheumatologists examined my hands as part of their exams,plus the examiner of course.
They weren't given access to my records or diagnosis, were allowed only limited questions and had to make a diagnosis based mostly on examination - examiner and all 11 Dr's said RA as primary diagnosis.
The new Rheumatologist's response to this was "so what do they know they are still learning"
Mystifying! I got a new consultant about 6 years ago - I was initially diagnosed 20 years ago - and she agreed with the first consultants diagnosis. It was in the same hospital though. Many years ago we were thinking of moving to a different part of the country and I asked my consultant what would happen. He said all my notes would be sent to the new hospital, but the new consultant might want to rediagnose me.
But….tbh if they were rheumatology med students….don’t you think they might expect to be presented with a patient who actually did have RA? You never know this change of rheumy for you maybe a success after all!
Interesting, they saw a whole day full of patients and did a 10 minute consult with each, some of us diagnosed and being treated some no symptoms etc.
But do you know those students success scores?
Mmm the examiner who observed them had a chat with me afterwards so I know he was happy with their exam of my hands but the rest was confidential.I accept they were still learning and could deduce that some patients in the "clinic" would have RA, Osteo, other conditions or non at all, and that they could've made a 50/50 guess etc. My point is that this exercise plus all the other qualified and experienced medics who have treated me have never once mentioned hypermobility or anything other than RA and some Osteo in my hands or elsewhere. So the Hypermobility seems a bit left field especially when I don't meet all the criteria in the official test.
No one wants RA, but taking the name away and leaving the pain and joint damage untreated isn't good either. I guess time and a new Rheumatologist will tell.
I would have asked the Rheumy exactly when was it that she stopped learning, having attained complete and perfect knowledge
Trouble is these days …she would probably have thought you were serious….& would have told you- because of course she thinks she is!
I am serious. Being a New Yorker, I am duty bound to call out BS when I hear it,
You wouldn’t if you were a Londoner!
My consultant retired last year, I saw my new one beginning of this year and he's happy with things and didn't change or stop any of my drugs.
I think it might be a good idea to check with NRAS to see if it is a new policy as here we can only get 3 medication changes. That here must be due to budgets but I'd be very worried if my DMARD was stopped as it works and my understanding is that its not a good idea to go back on it as its less likely to work again. If diagnosed then it might be a good idea to reduce medications if possible but to stop could mean cold turkey and it will take months to get them out of the system so what is the policy of new medications. I think it might be difficult to change hospitals too but can you ask her why and put it in writing for you and your GP. Often asking for a reason in writing tends to change things. You could play the innocent and say you need time to digest this approach and agree to it and you do have some rights. As said before changing because of effects is different from changing just because they want to try a new approach.
Hi Medway Lady, I spoke with NRAs yesterday and new Rheumatologists stopping DMARds and going back to ground zero (if that's even possible after years of taking them) isn't something they've come across, the lady I spoke to said to post on here to see if anyone has had same experience.My GP said its fine to change hospitals but difficult to get DMARD prescribed whilst waiting to be seen by new hospital, so I guess the silver lining if there is one,is that by stopping the Rinvoq it's made moving easier.
The thing is not that I want to take DMARDs per se,it just feels wrong to have spent 15 years being told I need them and must take em, to now being told let's stop.
Thanks for the advice about writing to Consultant I think that's a good idea, will wait to speak to GP as she's sensible and has good ideas plus insight and will help me with wording as I don't want to appear rude or ungrateful.
Thank you for taking time to reply to my post xx
It’s so weird isn’t it! You’re right no one wants to take medications but after 15 years it’s very strange. Who knows and it’s great your GP is sensible and helpful. They’re good here too and it does help. I hope you get it sorted or at least find out if it’s a new approach. Good luck. Xxx
If you check on the NHS site it does say you can go back to .DMards if a Biologic doesn’t work for you.That info was dated August 2024.
I only checked because I had thought once you were on Biologics you couldn’t go back.
So it does look as if treatment is in the move for RA - in England at least.
Sounds like a money saving strategy to me
Colour me cynical but I'm inclined to think the same thing, be good to have evidence that it's a strategic direction rather than an individual medic's whim.. I shall keep digging
Yes it what happened when my previous Consultant retired,it's a polite way of saying let's see what they've done and see if we can modernize treatment with newer drugs etc
Mm Rinvoq is one of the newest JAK inhibitors so I don't think that hypothesis works. I was told previously that there wasn't much else they can try other than another JAK. Will see what happens next.If I'm honest it feels more budget and waiting list related but hoping I'm wrong
I think sometimes a new Consultamt can re check you etc maybe good as mine just leaves you 10 min check once a year now! n Gps not there field.
I don't know, I think I might have a different view to many on here. My feeling is that perhaps it's not a bad thing if the individual in question is OK with it and isn't currently stable under current regime. Speaking from a purely personal perspective I seem to have faired much better off all medication than on. Dmards and biological drugs caused horrendous side effects, including liver issues. Steroids were over all the most effective for me. That includes intramuscular and into various joints. I was never stable on drugs, but worse in terms of conditions caused by tge meds themselves. They did nothing to alleviate the pain. After a discussion with my rheumatologist I made the decision to come off everything. I have had no rheumatic drugs for over a year. I still suffer with exhaustion, but have learned to rest when needed. I have some pain if I overdo things, but it's manageable. I take paracetamol and the odd ibuprofen. The joints that were already damaged remain the same, but I have had no further deterioration to joints.
I might be one of the luckier ones, I don't know. I have worked hard to remain physically and mentally active (within limits). Also removed known allergens from my diet. It helped. Will it help everyone? No idea! I also have no idea if I will get significantly worse or have a massive flare-up. I took an educated risk based on my own experiences trying out conventional medicine. It was a scary decision to make, but so far it was a good one.
Added...I did notice that another lady had been discharged from care at the same hospital. She wasn't so happy about it! I think there has been a massive influx of new patients.
Hi Blackberrywine, an interesting perspective and I'm glad it's working for you.I was very anti meds in the beginning and spent a lot on a naturopath. I'm already vegan (50 years) and gluten free with minimum processed foods etc. But some significant flares drove me down the DMARD route, like you I found the side effects difficult and the return on investment not always worth it. But Rinvoq was different, I went from walking with a stick, a zimmer frame in the house, a shower stool etc. to having days when I didn't need any of them. Sadly I still needed the Zomorph and Oramorph for the pain, but the Rinvoq did make it more manageable. The benefits of Rinvoq came at a price though not as bad as any of the biologics, dreadful Herpes in my nose, constant eye infections and low grade throat infections. I felt they were all worth it for the benefits and would happily have kept taking it. But when it caused the bone infarct, the liver damage etc. I knew it would be stopped and I agree with Rheumatologist decision on this.
What I struggle with is that she said she would've stopped it anyway due to her "ground zero approach"
And now I'm left for 3 months to see what happens, maybe I'll find I am better DMARD free but the xrays showed significant deterioration in hands and feet and that was on Rinvoq so I'm scared about the hidden damage as well as the changes I'm already experiencing in pain and mobility.
It will be interesting to see how this play out and I'll keep you posted
Well I may end up eating my words to be fair. It's a bit of a tightrope isn't it. I hope you find something that works for you.
Not Newcastle or James Cook but re Northumbria Trust Hospitals… I see Dr Atchia who is with this Trust. I see him at Hexham( and I live 50 miles away!)!but I know he is at several hospitals under this Trust. He and his team are excellentl.
never heard of it and dont like the sound of it, I would not accept they could look at changing your meds
Sometimes seeing someone new and going back to square one to check the diagnosis is a good thing. My son's foot pain was diagnosed as laziness, he just wasn't fit enough. So I went to the one podiatrist that I felt would listen the best and asked her to pretend she had never saw him before and start again. Bingo, we got the correct diagnosis.
But the hypermobility thing, there are many people with symptomatic hypermobility that would love to be diagnosed. It can be useful to have that on your record, especially if it is hypermobile EDS or hypermobility spectrum disorder as this is a collagen condition that can effect any system in your body.
I have it and when I last saw a physio they said there was nothing wrong with my hands, I had good mobility. I had to explain that I don't anymore, I used to be hypermobile, now I am not in my hands. I had to force her to look at the x-rays and see the amount of osteophytes on my fingers, because she wouldn't believe I had any!
I wouldn't change rheumatologists too quickly, wait and see what comes up at the next appointment.
Hi Lucena62
I think the strategy your new consultant is taking is a risky one for you, not for her.
I changed consultants after being with the same one for decades, as she wanted to specialise in Scleroderma. I was very concerned with this and she agreed to do a phased transition with my new consultant allowing me to meet with the new one at each appointment alongside my original rheumatologist. They were very understanding and accommodating to my concerns.
This is how your change over should have been and in my opinion, she should not leave you to run cold turkey to see what happens. Are you her experiment? I'm sure if the shoe were on the other foot she wouldn't like that course of action. New consultants can be an advantage and come through with new ideas and even diagnoses, but to leave you with nothing is astonishing. I think leaving is sensible.
Did you question her direction and voice your concerns to her?
I dearly hope you can find another rheumatologist who is more understanding of your plight. Good luck xx
Hi Wilfdog, thank you I feel you get it. I do agree all the risk is with me. I'm single and having had 3 episodes in last few years where I couldn't walk without a zimmer frame I'm terrified of going back to that. Trying to work full time with RA is tough and I've had to modify my role to be able to continue. I don't feel the Consultant fully understands how debilitating and limiting the disease can be, and the impact on one's whole life, and to be told go 3 months and see what happens isn't really in my interest but it's saved the trust 3 months of very expensive RA meds. So I am suspicious the approach has more to do with cost cutting than my wellbeing.
I agree a fresh pair of eyes is always good, and fresh insights are welcome but it's hard to trust those new insights and approaches when you feel not listened to and answers twisted to fit an agenda that perhaps does not have patient wellbeing above budgets and targets. At no point in my 10+ years with the other Consultant did he say "I'm a bit stumped so I know let's stop everything, leave you to your own devices, see how bad it gets or doesn't and then decide what to do" and I can't help but think that if it was a credible and well recognised approach he would've suggested it.
I did voice my concerns but was met with broken record technique, given no advice about tapering or stopping dead, what blood monitoring would take place to ensure all goes back to normal etc. Just go to GP to manage pain if you need to.
I've now got the "letter" summarising appointment and it is riddled with inaccuracies so I'll be replying once I can get thoughts organised.
Anyway thank you xx
I think you are doing the right thing moving. I wouldn't waste your time on her now; I think you need an urgent referral to another rheumatologist, preferably on recommendation. Can you go to your GP and ask for an urgent referral to another rheumatologist and explain the reasons why, taking your letter with you?
I agree, and yes my GP is smashing and very supportive, we discussed me moving the minute I found out about old Rheuma retiring,but moving on Rinvoq whilst not impossible is tricky due to who has liability for patient during transition. So oddly stopping the Rinvoq makes it easier to move. I'm speaking to GP on 15th so will get the ball rolling then.
Thank you xx
Good grief if they stopped my medication the fluid in the pleural and pericardial wound come flooding back, I’m concerned as I’m about to change consultants as mine has done nothing for me and is really horrible even to my family but the nurses told my daughter he’s had numerous complaints made about him. He doesn’t listen he talks over you and hasn’t even looked at my history, he’s supposed to be working alongside my respiratory consultant and radiologist but he’s not.
Take care
Wendy xx
Oh my goodness he sounds dreadful, not based at the Memorial in Darlington is he?I asked my GP this question "if you, your mum or sister had RA which hospital would you go to and which Consultant would you see?"
That has helped me a lot and I had the best guy until he retired, I've asked her same question this time and she's fully supportive of me moving.
Hope you get sorted and a better experience the disease is bad enough with needing a PhD in self advocacy
Xx
He was I think now at north tees
Logically this sounds completely stupid. I cannot imagine why the GP sounded supportive, or accepting, of this approach. Why waste time and resources on repeating all the tests that have previously been done and risking a flare. She sounds arrogant and inexperienced.
I think you are wise to find another consultant. I have had to change consultant several times, either because of moving area or because the previous one retired or moved. I have never come across this dangerous idea.
note my diagnosis is Adult onset Stills Disease which for me manifests as rheumatoid disease . Diagnosed aged 17 in 1979, fast forward to now aged 62 needing pain relief after a year of unexplained flare . Locum GP asks for letter proving diagnosis which I don’t have. I suspect as in your situation he wants to negate the diagnosis and label it something else but he didn’t run any appropriate tests either. I shall expect something different again when I’m next lucky enough to get a f2f appointment as it’s always a locum and one day I could see one who has heard of Stills disease. I hope whatever happens you keep well .
Hi Stills
Sorry, you are still in an unexplained flare. Can you go back to your rheumatologist to see if they can help, rather than your GP?
If you don't have any letter proving your diagnosis, you can ask to have a copy of your medical notes from when you were diagnosed. They will have them. I have done it for writing my book. I asked for notes back to 1973 and they have printed them out for me. You have a right to ask for your medical notes, so they can't refuse you.
Doctors have become a business these days which can be very detrimental to patients who have clearly a chronic disease.
I hope you manage to get an appointment with your rheumatologist. It would be your best bet if you have been in a flare for a year. Take care xx
Hi WilfDog, thanks for the advice, could try that especially as dx was at Addenbrookes which was brand new at that time so probably kept good notes even back in ‘79. I stopped taking steroids etc by about 1984/5 and have self managed since then perhaps to my detriment. This ‘flare’ began Nov 22 and unfortunately a blood test flagged cancer in Feb 23 and all that year dr pursued that with scopes and scans finding nothing. Everything thing I said about Stills causing organ damage that could explain symptoms went unheeded. Finally got some naproxen last month from a locum and it was him that asked for proof of diagnosis. I’m in the same county as Addenbrookes albeit a different bit of NHS so it shouldn’t be too hard should it.
How are you feeling?
If you contact the admin at GP surgery they should be able to sort out getting your medical notes. I think they write to NHS England, or some central body where medical notes are kept. They then printed them out for me. I had notes from 1973 to the present day, (a lot of work for them, but as a patient, you have the right to see your medical notes). Mine were intriguing and I found out a lot of things I didn't know from when I was young. Well worth asking your GP surgery.
I'm not too bad a the moment, thanks. I am waiting on a reversal shoulder replacement but have a few heart issues to check out first. I take my etanercept, prednisolone and Doterra supplements as well as exercises, 100mg of Gabapentin at night to hopefully negate the spinal problems and my blood pressure tabs, along with my oils. I'm such a lightweight with painkillers and anti-inflammatories. My stomach lining isn't great now, so I try and go 'au naturel' if I can in terms of self-help. Hopefully that keeps everything at bay, as much as possible. Although this last month has been very stressful as we've been burgled, so I haven't been my best, but trying to keep on top of it....
I hope you get sorted and your GP can maybe refer you back to a rheumatologist once you have your medical notes. Good luck with it all xx
Thanks again for help, I’m too guilty of giving up when I hit red tape and having moved flats every 12 months in the 90s when I worked on London I didn’t have GP a while.
Bad news about the break in, I don’t suppose the police helped much?
I get that, but try to focus on one thing and complete it. I'm so guilty of having loads of plates in the air, but try to stay true to self care. It does pay off.
The police are doing a bit, but only because we've done a lot of hard work for them, and still they are brushing their feet. It's very disheartening to see how the police system is run in this country. It appears geared towards the criminal and not the victim!
My husband has RA, not me, but thought I'd check the NICE guidelines, and there is nothing in them to support her approach.
cks.nice.org.uk/topics/rheu...
They are currently looking at changing my husband's medication. He is on Tocilizumab, but they are keeping him on it until they decide what to put change him to.
Freeman's hospital musculoskeletal department is the best I've been looked after marvellously since first diagnosed 1996 when pain gets to much I can ring help line and they help me ,I'm taken 25 ml methotrexate and rituximab infusion.xxx
I would agree up to recent visit,it's why I asked to be referred there, who do you see JustLucy? My consultant was Richard Reece and Karl the Rheuma nurse
Hi,my consultant, Mr.Pathan my specialist nurse is also karl ,karl has helped me sooo much you can tell him how you really feel and he understands, also see Mr Douglas Harris feet very deformity now I'm having a good think about having toes removed ,I also go up to ward 20 for my rituximab infusion they are all lovely nurses .I'm 65 now been going 28 years .x
Karl is fab isn't he, especially with health issues of his own, kind, knowledgeable and funny. Sadly he's looking at retiring too.I only ended up at The Freeman because I followed Dr Reece who was brilliant.
The toe removal sounds radical and painful hope you get relief whatever you decide to do. Xxxx
Firstly thank you to everyone who read my post and took the time to comment, very much appreciated.Secondly a quick update.
On Wednesday 23rd Oct I woke up but couldn't get out of bed, approx 5 weeks since Rinvoq stopped.
Both feet in flare but right one considerably worse and agony, could not weight bear at all. Took 25 minutes using zimmer frame to get to toilet.
Rang Rheumatology clinic at Freeman and Secretary took a message to Dr Lorenzi and explained situation and that pain was so bad there was no way I could get to Freeman.
Response was that she was sorry to hear of the flare (she stopped Rinvoq and left me on nothing to see what would happen) and that without seeing me she couldn't help, she suggested a GP home visit so she could get a report that way, she did not ask for photos.
Phoned GP surgery to be told I'd missed window for home visit that day and to try again next day.
Thursday phoned again and GP arrived. I live alone and door was open but he was reluctant to come in, much shouting ensued.
GP was new to me, examined foot and said RA flare up on right side of foot which triggered gouty arthritis on left side and that reason for so much pain was 2 things going on. He prescribed 3 days Colchicine for gouty arthritis and said it was up to Rheumatologist about RA. I asked about rash which is now all over and itchy, didnt even look, I suggested pictures of foot and rash he said not necessary.
At this point I'd not eaten for over 24 hours, I live alone. But here was zero interest from GP in my overall wellbeing, hydration or nutrition or how I would get prescription.
I called a friend who helped me out.
Then I called Rheumatology Secretary to tell her outcome, and that GPs report should be on system by 13.00 on Thursday.
On Friday 24th at 8.40 I received a call from Dr Lorenzi who said she'd read report but it was difficult to diagnose via a 3rd party visit and no photos! I said I wasn't told to get photos, but had suggested it but was told not necessary!
She said she really needed to see me in clinic but was on leave after Friday. I explained that I can barely get from bed to toilet so no way I could get to Freeman at this point. Eventually she suggested a steroid injection from GP surgery to tide me over and an appointment mid Novembet when she gets back and when I should be more mobile (if injection helps) I asked what treatments she might be considering next but no comment.
She said she'd email surgery immediately.
So I left it a few hours and phoned surgery, nothing received, I enquired about home visit for injection by District Nurse, told no, it would have to be in the surgery with a GP and a nurse present, not true if the last 2 are to go by, unless the system has changed. Gave up
Rang Rheumatology again, Secretary said Dr Lorenzi had done draft, but it was in pile for her secretary who was on leave on Friday so wouldn't get done till Monday but then Dr L on leave so it wouldn't get signed. By this point I broke down in tears. The lady I was speaking to very kindly said she'd type it, get it signed by Dr Lorenzi and get it to surgery within a couple of hours.
At 13.30 on Friday I rang surgery and sure enough, authorisation for a steroid injection had been received. I asked if it had been actioned in anyway, it had not, nor did there seem to be a plan to.
So I asked again about a district nurse visit to administer the injection and was told it would be referred to a GP for approval and I've heard nothing since.
It's now Sunday and I'm at my wits end, still bedridden and hobbling to toilet with Zimmerframe. I feel completely beaten down by a system that does not seem to care.
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