LUPUS UK are presenting at a conference for rheumatologists, and we want to make sure we include your voices. If you could talk to a group of rheumatologists, what is the most important thing you think they need to hear?
Reply to this post in the comments, or direct message us, with what you most want rheumatologists to know
We may use quotes from comments on this post anonymously in the presentation, so please tell us in the comment if you don’t want us to use it in that way.
Deadline: 12pm, Friday 5th April
Written by
Debbie_kinsey
Administrator
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Listen ,take me seriously (its not in my head) and don't dismiss me because i dont fit into the "text book" symptoms boxes. Look at us as a whole not just at blood results on a screen. communicate with other depts and consultants. Rheumy helpline waits can be too long and rheumy secretaries unhelpful often when we need help the most yet you tell us to contact these people . SML x
As Spanielmalady said. Additionally, please stop labelling those who don't quite tick all the boxes as having fibromyalgia. Fibromyalgia doesn't give a positive ANA and ENA panel, or systemic inflammation in joints that are visible on an ultrasound scan and Raynaurds. If s/he can't give you a firm diagnosis, be honest, say so and take a wait and see approach.
I'd also add that if they do take a wait and see approach dont keep us in limbo keep in touch even if it's a phone call check. Don't leave us struggling with symptoms needing a new referral or struggling to get appointment
how much time is wasted on new referrals when you could just be returned if its wait and see.or not, if you've been seen and worsen it should not have to be a long new referral, It is ridiculous to have to be referred again and left suffering, you make a good point.
I agree. Also dont make assumptions based on our age. Sometimes when a diagnosis is missed and leads to complications we end up at their clinic later rather than sooner. Fibromyalgia plus middle age. Grrrrr
Responses to points below may vary depending on 'country', 'health system', 'hospital trust', 'clinic', 'doctor' etc. I am mainly interested in NHS responses as this is where some of us have fared badly recently, when GPs refer us locally.
Any patterns might be interesting.
Looking at my local NHS hospital's website, lots seem to specialise in sports medicine.
I had not a sports injury unfortunately, but had many things going wrong that GPs were concerned about.
When it got to my rheumatology appointment:
Response was, I was told I did not have systemic autoimmune disease as I walked into the room.
This was before discussion of symptoms and before any examination, so presumably was based on bloods from GP surgery, the only one of significance being a strong positive ANA.
I felt uncomfortable talking about anything after that.
Before my second appointment and I was surprised I got one, but they had ordered a big CT scan, I phoned GP surgery to ask for antidepressants and antianxiety meds (that I have never requested before in my life) as the way the consultant spoke to me at the first appointment, was so dismissive and aweful when I had felt so bad for months.
The process of being reviewed could be improved a hundred fold.
(It was too late to get an appointment with GP so I went to rheumatology appointment without meds, but at least I was able to communicate my worries to the GP receptionist I spoke to and she was good to talk to.)
******************************
Make it clear to patients how you assess them.
Do you still look for more than 4 of 11 symptoms
OR
do you use the 2019 classification criteria intended for research only?
Please be more honest and upfront about the standards you use.
Do you still diagnose sero-negative Lupus?
If you don't, please include lupus-like UCTD in the conditions you treat.
Include and describe UCTD on your website list. It is a condition that is hard to describe to family and friends and nobody has heard of it.
Acknowledge that some patients even get Lupus nephritis without bloods being positive. Only when a kidney biopsy is done are they diagnosed with SLE also, surely this is a bit late.
When patients are referred to you by a GP, and the GP no longer wants to advise on symptoms because a referral has been made, please ensure the rheumatology nurses are available to help patients whilst they are waiting for their initial appointment and also between follow-up appointments, even if a diagnosis has not yet been made. They have nowhere to go for help otherwise, and this can go on for months.
Maybe allow GPs to start treatment with Hydroxychloroquine to see if symptoms improve and to reduce the incidence of flares whilst we wait, and prevent the need for other services, A&E, 111 etc, to become involved.
If blood results change from positive to negative once treatment starts, don't alter the diagnosis and stop treatment.
Believe patients when they tell you about their symptoms.
Sometimes it is in the middle of the night we feel worst, say 3 am at night not in at 3pm in the afternoon when we have an appointment and are examined.
Don't just give us drugs. Help us to understand our symptoms better, particularly headaches, peripheral neuropathy, and autonomic dysfunction (including how covid infection can impact on disease course for some by increasing autoimmunity).
Be honest about the increased likelihood of adverse reactions to drugs etc. Explain why this happens.
Include areas like this in your research.
Look at research elsewhere in the world, not just in the UK and Europe, for example regarding new biomarkers.
Move forward in the use of newer immunological markers, as people are missed because there are too many gaps with current testing to make the judgements you do.
Don't cling to a few unreliable tests, where methods and cut-offs can vary from hospital to hospital.
Reach better consensus regarding best practice test methods, so the most reliable methods are used everywhere.
Think carefully about ordering a second big CT scan, after a recent one of the same area has already shown nothing. If you need to use scans to diagnose, instead look at individual joints or glands most likely to be affected and consider ultrasound or x-ray first.
Don't dream of telling us everything is in our heads when it is clear to us that our bodies are not functioning properly.
Review patient feedback to inform and manage and supervise staff, ensuring patients are dealt with, as you would like your own family to be looked after.
Be honest and prepared to challenge use of criteria, standards and pathways that are flawed.
Don't just automatically go along with the opinion of groups or organisations set up to oversee practice as they might not really have the most experience.
Those with the most insight might be those who give the most hours to seeing patients, and lead in the bigger hospitals, who don't have time for these things or an underlying need to be governing things.
Find ways of gathering opinion more broadly, so decisions are better informed and more representative of the breadth of patient need.
See the disease as a group of closely related, similarly playing out, disorders. Be prepared to handle the whole breadth of related conditions.
Sharing and growing expertise amongst the medical community. Equip others with knowledge:
Think of how knowledge can be shared freely and widely covering all the facets of systemic autoimmune disease.
In the States there is an example of this model, for autonomic dysfunction, a 'two week mini internship', with material freely accessed and always available online.
Information is also available for patients to access so they can learn also. A wonderful model for sharing expertise and allowing discussion too.
In 'About', they say "Education is our mission. The Dysautonomia Project is a non-profit collaborative effort of volunteer physicians, patients, and community leaders working together to bridge the gap between what autonomic specialists know and what community-based providers and patients need to know."
There could be a similar thing for SLE, but people need to come together, share resources and ideas, rather than just do their own thing for their own hospital or research programme .
Could there be such a nationwide approach encompassing all?
It would be powerful
Web design is important.
So worth employing people who have demonstrated they are brilliant at this.
In addition to an online course, knowledge could also be shared by having secondments, for budding rheumatologists, to Centres of Excellence and other top well established UK Rheumatology Centres.
Not every patient can travel to these centres (due sickness, age or a lack of carer support etc).
Centres of Excellence and top well established UK Rheumatology Centres could form a network, and have an important role helping grow the next generation of specialists throughout UK hospitals.
Alongside this establish the possibility of patients having online appointments with specialists elsewhere, who then work more formally with specialists and GPs local to patient.
Very well said. My daughter has given up on a diagnosis and self medicates due to not being listened to because by the time she linked her numerous symptoms, blood tests were negative (despite uninvestigated positive ANA years earlier). Patients need to be respected, not patronised. I hate to generalise but I do wonder if female/younger rheumatologists may be the way forward because the two my daughter saw were older, white males, both extremely set in their ways (and probably the demographic least likely to suffer from lupus).
I went private. I don’t have health insurance but had to take this step, to turn things around. My earlier local NHS referral had failed me.
I think the NHS is broken, and rheumatology referrals are not always working. Patients are experiencing dreadful symptoms and organs can then get damaged. Nobody should have to wait until that happens.
I think GPs should be allowed to prescribe hydroxychloroquine as it is such an important drug.
It seems a pragmatic solution.
Once on hydroxychloroquine they could see an improvement of symptoms, so adding to evidence that cause may be CTD.
If other drugs needed could fast track to rheumatology.
I hope your daughter finds the help she needs fast.
~ A consultation is a teeny, tiny snapshot of my life, just because I look well & have minor/no symptoms for the few minutes you see me, does NOT mean I don’t have some extremely bad days/weeks when I’m really suffering.
~ Please take the time to study the photos I show you of rashes, blisters, skin lesions, peeling skin, blue/white/red fingers etc.
~ Show an interest in my Symptom Journal & read for yourself what I experience when I’m not in front of you in a consulting room.
~ I am a unique individual, therefore please stop making assumptions & presumptions about me. We are all different, I often do not fit into the boxes you try to force me in to.
~ Listen properly & hear what I say, stop misinterpreting my words.
~ It is dangerous, (as I know to my detriment), to assume a particular drug will be ok for me just because many other patients take it without issue.
~ Please ensure clinic letters are truthful & accurately reflect what was said during the consultation. It’s so infuriating & dismaying to receive a letter which is full of mistakes, lies & discrepancies.
~ You never look at my repeat medications list I take to show you, thus my clinic letters always have several errors regarding this. That’s so remiss of you, especially when the appointment letter specifically states to bring a list of current medications.
~ Your clinics would not be so oversubscribed if they were open longer, eg evenings til 10pm, weekends & Bank Holidays as in other areas of medicine & many other places of work - 24/7 for some + shifts.
~ My husband has RA, he attends the same Rheumatology Hospital as me, his care & treatment is outstanding. A complete contrast to my SLE treatment & care …. Why is that? (As a new patient mine was excellent but is now abysmal).
I also agree with many of the excellent points raised by others.
When you first are referred to a Rheumatologist you really do not know what to expect. You are scared, apprehensive and in pain. As the patient you want to know why you feel as you do, you want to feel better yet you are treated often as if you do not matter, are exaggerating, ‘hysterical”. Even when your bloods show the required findings for a diagnosis you are often handed a leaflet and told you will be taking a drug that may affect your eyesight. The patient will struggle to take in information, need to ask further questions when they have left the consultation and there is nowhere to go for those questions until the next consultation which may be months away. GP`s will shrug or deflect questions as they do not know the answers, The Helpline is overwhelmed and understaffed and so you feel unable or unwilling to contact them.
When you arrive at the follow up appointment you as a patient have a myriad of questions l please don’t dismiss us. The Fibromyalgia tag once given is a label to dismiss patients as hysterical, unbalanced and in need of cognitive behavioural therapy. This is detrimental to those with genuine Fibromyalgia and does nothing to help those with Lupus.
As others have said the patient is a person who before they became sick was a healthy functioning individual. Please do not talk down to us, do not use medical terminology that we might not understand, be honest and explain the tests required and the possible outcomes. What we understand we can deal with.
Again as others have said when our bloods are negative do not simply say you do not have Lupus. As someone who has been diagnosed and undiagnosed so many times, it is soul destroying , confusing and worrying.
Please consult with other Specialists, when they offer potential diagnoses do not dismiss them either.
We understand that the NHS is under pressure, we know that you have high caseloads but each patient deserves to be listened to and taken seriously.
During changes of Consultants please try your best to read our notes to understand why the previous Consultant made the diagnosis they did. My current Rheumatologists first words to me were “My goodness we Rheumatologists cannot agree on a diagnosis for you and that must be so difficult for you” Just those words made me cry because at last someone was acknowledging the emotional impact medical of gaslighting and inconsistency.
When we point out that you said something completely different in our previous consultation than you put in a letter to our GP, do not respond with outrage and say we can see someone else.
We want you to succeed and help us. We will have a professional relationship for a long time so we need a relationship based on MUTUAL respect and trust.
I would like more more information/resources/access to research for younger people with CNS lupus. My son is 13 and it's a battle to be heard and seen with his Rheumy team.
Systemic means systemic. Stop hiving off symptoms to another speciality when it's usually lupus. Stop giving us a label of, say, mild lupus and then if you have gastrointestinal issues say it's nothing to do with your department. Or when you catch Covid and it provokes a lupus flare, say it can't possibly be lupus even though you have a butterfly rash on your face, massive joint pains and other lupus symptoms.
It's interesting to hear Covid triggered a flare. I had my usual sun rash straight after Covid. This rash happens the day after exposure (extremely rare now as I'm so careful). But this time it was after a fortnight in bed with no exposure at all. In my mind it could only have been triggered by Covid but when I told my rheumy about it, no comment was made. I'm now wondering how common this is and what might happen next time.
And also to add. I'm sure all patients really appreciate how hard it is to manage and diagnose complex conditions like Lupus. We really, really appreciate doctors that are constantly seeking answers and possibilities. I had a consult with one rheumy where I explained that I was just in a holding pattern, with no relapses but no improvement either. He said "there's always something that can be done." I appreciated that.
I’m thankful to have mostly, but not always, had rheumatologists with reasonably open minds. I’ve also had to learn how to keep my own mind open and not get fixed on having one particular disease such as Lupus or Scleroderma. It took me 12 years to be correctly diagnosed in London’s Royal Free last year by one of the world’s leading scleroderma experts - whom I saw with my own NHS rheumatologist’s support.
It seems to me that rheumatology is an art form and, unlike cardiology, gynaecology, oncology or other more common specialisms, nothing about it is fixed in stone. So it takes a very special kind of doctor to choose to specialise in rheumatology - one who can see beyond the obvious and look at the bigger picture with great care and as much compassion as possible. My rheumatologist is one such. She’s a Lupus specialist but has kept me on despite me turning out to have a rare form of seropositive systemic sclerosis. For this and her kindness towards all of her patients, I’ll always be extremely grateful.
Spot on . So far I have written about my negative experiences on here. You have pulled me up short. There were two or three that took the times, referred and letters were accurate and got the diagnosis picture much clearer. Lets celebrate the good men and women too. xx
Quite a few are well known.many speak at conferences. They try to get the message out there. But you have to have people willing to listen and follow thier suggestions. Sometimes the Health boards and systems they are in can make this much harder for them. Restrictions on what they can and cannot do, lack of funds, or just lost their spirit and overworked. So much in this mix really. I have said thsi so long ago but worth again make Auto Immune its own speciality. But I do not believe we will ever see the day. Funding, staff and so on. Hang on to your good Gp, Nurse , and Consultant if you have one.
Some of the talks at conferences could be about the things we are discussing here - including gaps in care.
Much is focused on drug development which is great, but other issues might also be more current.
Examples:
1. The limits of the 2019 criteria only intended for use in research now being used by some to define 'who' and 'when' to treat.
2. The impact of covid, and maybe even covid vaccination dare I say it , on the course of the disease.
For some there seems to have been a definite increase in autoimmunity.
In Australia and the States I have come across sites where this is recognised.
eg for Covid there is a section on this University of Texas at Austin webpage, Post covid FAQs on Autoimmunity. (You need to scroll down a long way, about half way down the long page, to get to heading 'Autoimmunity'.) uthealthaustin.org/clinics/...
For Covid vaccination, although overall benefits to society meant wider picture accepted as most important and this had to be at the time. Please acknowledge some need support following this:
3. Research into mechanisms and why we can get more adverse reactions to drugs etc..
and this is not due to allergy ..allergy is a specific term which is miss used so often.
Too much is political, maybe even controlled from outside Rheumatology but then we need to question. Those who define a position don't always have the most insight.
Approaches taken, do not always benefit patients as much as they could.
In other countries there is sometimes a different approach, so we could look more globally for answers.
Much here is driven by research and profits.
Immediate patient care sadly can come second.
An example:
In terms of antimalarials, why can't mepacrine be licensed in the UK, as it is in the US.
It can help those who can't take hydroxychloroquine. It is not known to cause eye issues.
It also works very well synergistically with Hydroxychloroquine, covering symptoms hydroxychloroquine does not always reach.
There aren't the profits to be made doing this so it is ignored.
Some have to pay for a basic drug and it is ridiculously hard to get if you can't get it at the local hospital because you are not patient there.
The Lupus Encyclopedia, 1st edition, by Dr Donald Thomas, says of Mepacrine (also called Quinacrine)on page 518, that is helpful for "rashes, serositis (pleurisy), fever, fatigue, and low blood counts. One of its biggest advantages is that it appears to stimulate the brain better so energy levels and memory improve better with quinacrine compared to other anti-malarial medications. It works a lot faster than hydroxychloroquine (which can take six to twelve months for its full effects). Quinacrine can start to work by a couple of months, and by three months its full effect is noticeable. In fact it can rapidly improve severe discord lupus, hair loss, and mouth ulcers within 4 to 12 weeks."
Personally it has helped with muscle strength and coordination. One side could get clumsy and the other arm was weak. Incredibly, it might also help me to void normally. For me a massive improvement yet the drug is so difficult to get.
Why is it unlicensed and why do NHS patients often need dermatology referrals for it to be considered - is not this something all rheumatology departments could offer on the NHS?
Are doctors advised to only allowed to use one Anti-malarial, those governing saying hydroxychloroquine is sufficient and too costly to factor in others into process? Where is the logic in that, if a combo is better?
Re:Mepacrine - it has worked well but finding hurdles.
Posted saying I nerd tablets not capsules containing tablet.
Expiry dates and pricing varies a lot. Pharmacy says they don't make a profit.
It is like stockmarket with things changing day to day probably due to changing demand. Prices changing so much for many prescribed drugs at the moment but here only made in one place so no competition:
Few know how to get involved and those with UCTD, or have not been diagnosed, have no way of contributing.
I belong to the Patient Participation Group at my local GP surgery. We meet online with the practice manager and a GP every three months. We quietly give the patient perspective and it has all come together extremely well. Everyone gets on brilliantly because it is working out well.🙂😁😄😊💯 Simple things like contributing to website design and newsletter content have helped.
For systemic autoimmune diseases, patient representation needs to cover the broader spectrum of the disease, each stage in the diagnostic journey, and the many facets of the disease for which we need help.
Maybe regular online national patient contribution meetings on different aspects and forms of CTD conditions that anyone who is interested can join, and alongside easily available feedback questionnaires for those who can't attend.
as diseases emerge constantly there can be understanding that a doc cant know everything , but an electrician has to re educate to keep up with new things and hairdressers all sorts and a doc should want to, to want to have the answers.
I was told its systemic ,its rare , we dont have all the answers, to clear bloods and now its all in my head or just sorry we dont have answers its not rheumatological its not neurological, yes we can see your symptoms its not that we dont believe you, try to meditate. seriously it has all been contradictory, and hypercritical and bewildering. neurology say due to hydroxy and steroids helping return to rheumatologist, rheumatologist says nothing rheumalogical, yet all insist fibromyalgia despite problems they say are not, like recent rheumy said rashes were not fibromyalgia 🤷♀️when I said in no way were they're he did not deny but still does nothing.
what im getting at is the subject will never be known inside out as they have their boxes and no one is the same even if same condition but compassion care and looking for answers if not known is the key not dumping you with no care and saying we dont know. I believe in my case they do know or should know my symptoms are not unique but when you look at data sheets and not the person you need re educating.
The people creating the tick sheets could change their mindset to think about outcomes, in terms of what users of the system ( patients and doctors, including our GPs) experience.
As dg70 says below things are not brought together..
There is no conductor, like with an orchestra, overseeing our entire case, and our records are not clear enough for those reviewing them to always bring things together.
Artificial intelligence might do better - data mining, to determine patterns of disease, and then mapping the patterns to us as a group of patients, with maybe rheumatologists and GPs checking suggested findings made sense . 😊
It is about care, compassion and making things easier.
But our experience can be the opposite.
I think in the olden days there was a different mindset.
I actually think they are wasting money at the moment. My general experience of referrals in local NHS has been they have been a waste of time. Although the doctors have been good, the pathways and criteria used did not help me, and might not have been helping them either.
I even managed to get a bad reaction to Gadolinium used in an MRI, I think because the single check of my eGFR captured a few months back was not enough for there to be any flashing red warning lights.
That single criterion was not enough for me, although for the majority it is fine, so the risk is accepted and those who do the procedure are covered.
I know as well as more scans, there are more operations being done at the moment.
But I think it is all target driven and not always sensitive enough to needs.
For us, this impacts more because our bodies react differently to the majority which means everything is skewed. We need there to be more sensitivity to our needs.
Goodness me I wouldn’t want to bring you or anyone else here short! And really it’s only 3 out of 7 I’ve seen who have been wonderful - 2 of whom I’ve had to trek and see privately, as experts in their field. My own tremendous local NHS rheumatologist seems to be pretty much unknown in wider U.K rheumatology circles - or very little to be found online at least - but I’m guessing she guards her privacy closely. But I’m sure she’s easily as good as any of the big Lupus specialist’s names people mention here - if not better!
One of the things that makes her so very special is that she isn’t burdened by a big ego and is young and also has the best sense of humour I could wish for!
Despite being clinical rheumatology lead in my area the only references I have found about her on Google are a few open HU posts raving about her on the NRAS - but I believe she sees all of the Lupus and (primary) Sjögren’s patients in this large Scottish area. I’m also guessing her patients will guard her name closely because she’s already spread very thin and obviously we all want to keep her! My favourite infusion nurse is one of her RA patients and we agreed on Friday that she’s the bees knees of loveliness! I think I’d have to travel to London and see the U.K. scleroderma expert if she ever moved or left.
Also I want to make the point that one person’s super hero rheumatologist might turn out to be another’s doctor from hell - and I’ve had a good few doctors, including a couple of rheumatologists, whom I would describe as total duffers - if I was being really kind! 😉X
Yes good point re super hero v Dr from hell. We all have different personalities and that will factor in at clinics. Personally I like a clinically curious, direct and through approach. Along with informative, accurate clinical letters. I have noticed my GP will remark how helpful certain letters are. I am so please you have such good care now having been through so much. Take care. xx
Your last point is very true. I've seen 6 rheumatologists and there's only one I think I fully trust. There were a couple of absolute stinkers.
But one of them was a well known lupus specialist much beloved of a lot of people here. People talk about him like he's a rheumatology rockstar. There's no doubt he is a kind and dedicated rheumatologist and he did help me, but he also massively let me down. He made two errors which caused me harm and prevented me getting the right care. I can forgive mistakes, he's only human, but he promised to do something to rectify one of the mistakes (the other was too late to fix) and then didn't. Then he wouldn't see me again and bumped me to another consultant. So he apologised but then washed his hands of me. I've never really forgiven him for that. So, yeah, different strokes for different folks!
This is good to know. I am at the Royal free, but my consultant is not very good so would love to know the name of your Lupus specialist to see if I can move over to her as he has just given me the broad diagnosis of Fibromyalgia now!
My rheumatologist’s in Scotland and doesn’t see patients privately so no use to you I’m afraid. The rheumatologist I saw at Royal Free js called Professor Denton and you could try to see him but I think he only has time to see systemic sclerosis patients tbh. He’s been working with scleroderma patients for +40 years so he’s one of the few world experts.
I travelled down from Scotland to see him last year for a one-off private consultation because I carry a rare scleroderma antibody but kept being told locally that I just have seronegative Sjögren’s, possibly Lupus, but not SSc or EDS. I finally got fed up with the diagnostic vagueness and asked my rheumatologist if she minded me seeing him to learn more about my rare SSc antibody. She said she’d be very interested and was happy to refer me and sent him all my immunology reports etc as she doesn’t see scleroderma patients - let alone with this antibody - and I have no obvious skin tightening.
There are lots of Lupus specialists in London I believe so it shouldn’t be too hard but you may need to go private first time. I’m sure lots of people here can advise if you post and ask.
You may not know exactly what name to give it at that start but thats ok. Be upfront as we are just grateful that we are being listened to and can accept you are only human.
Please show some empathy for the person sitting in front of you at that time. I don't want Lupus; it's not my fault. I deserve to be listened to; you might be a Consultant in Lupus, but you are not the Consultant in my Lupus. "How are you feeling today?" Maybe a shift on the Lupus nurse/practitioner phone line might convince you of all the different facets that Lupus brings. Choose your words carefully, what is one person's "mild" is another person's "hell" Thank you for considering this reply. 😊 🙏
Overall, I have had good experiences within Rheumatology and am thankful for that. I agree with OldTed60 about Rheumatology as they deal with lots of diseases, symptoms, some of which there is no test for so not set in stone, and need to lol at a wider bigger picture.
Initial first consultation needs to be available quickly so meds can be started as it can take a long time to improve lives. More information should be available to limit expectations regarding living with Lupus and stress we are all individuals with individual combinations of symptoms and reactions. Mental health needs full consideration from the outset
My rheumatologists team have been wonderful and I’m grateful for them but the lack of communication with others healthcare professionals (GP, Dermatologist, A&E) has put me at risk once too many times. I also don’t understand why the NHS has so many different systems, my GP often tells me they cannot see notes from the rheumatologist team and often refuses to prescribe medications.
Also try to see your patient before you take them off their SLE medication. Instead of allowing the nurse to do it for you. My personal opinion the doctor(rheumatologist)-new doctor should be assessing their patient properly before taking them patient off the drug. Instead of depending on the blood test even though it was negative. When all previous results were positive and all previous clinic appointments I have serious lesion which were verified by dermatologist,lethargy is unbelievable but still keeping awake so that I can sleep at night, if not I end up waking up at night even though I am so tired and exhausted.
Yes please don't hide scan results in full dismiss patients sytpoms as mechanical,weight based.Patient knows body if something new do tests be kind smile more it helps.
Don't ask us choose one thing main issue takes note all
Check referral gone threw after doing them I had alot referral say done don't go threw thankyou
~Using patient portals to provide copies of patient letters and scan results, as well as blood results etc.
Some places do this, others don't.
Standardising communication processes more across all hospital departments.
~On referral patients can go in for scans, but appointments are virtual so unlike a few years ago they no longer see a specialist. Instead told they will be contacted by phone or more likely by post, but months later nothing received in the post.
~Some people are also not getting immunological test results eg. ANA and ENA results etc for weeks or months. This is nerve racking for them. You would assume testing was successful otherwise a repeat would be requested.
What is holding things up, lack of someone to give the bad news or lack of someone to refer the patient too?
Do hospital departments know what they are doing?
It is not right that we come in for tests and don't hear back without chasing. Patients did their bit. You get tests done and stats go up, but we hear nothing.
In the end we end up with really low expectations and realise that patients knowing does not matter to you, and then we realise that really you don't care. Anxiety about the next interaction then causes flares .
Sometimes chasing ends up involving PALS too.
Could not one tick box or target be communicating information back to patients
It is not just about you doing tests and having results.
Not saying this happens everywhere. My experience has been that turnarounds are good. A lot have had issues though somewhere or another.
For our rheumatologists to communicate clearly to GP,s after our consultation so that any problems we have in between time are understood or easier to understand the connection to our lupus by our gp instead of just putting it down to something else due to lack of simple communication in notes.
I agree and clear instructions to the GP of the dose of steroids required when in a flare and remind the GP`s that they have a direct line to the Consultant and should use it not tell the patient to call the Helpline earlier.
I have had dreadful experiences with Rheumatologists in general sadly. I have rare poor interactions with other specialisms but almost every Rheumatologist I have seen has talked down to me, “ so you have read it on the internet and now you have it” or : try to get on with your life” or “ you move pretty well for someone so obese” It is demoralising, prohibits a reciprocal discussion and makes you worry before every appointment. My new Consultant is humorous, thorough and comes across as if he cares. The nurses talk about how different he is to “ the others” which speaks volumes really. I actually feel relaxed enough to have a giggle with him. Last time as I entered he said My God you have been through the mill haven’t you. I said how do you know? He laughed and said because I read your notes and pulled a face. I said wow that is a first, he said tell me all about it. I asked which bit and he said start from when I last saw you. No rush, no pressure and the offer of phone me anytime if things get worse. He even told me to buggar off when I queried upping my Hydroxychloroquine. I did laugh out loud. He said note to self record in capitals nit a chance in hell on her file ( I had macular odema and had to stop the hydroxy for two years) .I dread finding out that he has moved on because once you have had a consultant who makes you feel that you are not losing your mind you just want to keep them xx
He sounds a keeper for sure. The internet issue is a good point. Lots of people are reading things on the internet and then scaring themselves when nothing is wrong. But this the backfires on a patient that does in fact have those symptoms and is indeed unwell. We are told to refer to NHS guidelines regards conditions or read information re calling 111 etc so not sure how a patient is suppose to find a solution really.
That issue was ludicrous in my case. The only time I have ever got up and walked out of a Consultation. I was incandescent with rage. He had given me an ARC leaflet and said read that instead of talking to me about what Lupus was and what to expect. Listed was Lupus UK and I rang in desperation asking for info on my poor valance, tinging in fingers and feet, inability to say words my brain knew, stuttering over conversations etc. The Rheumatologist had shrugged and said I don’t know what it is but it is not Lupus. They suggested I buy sone books. One of the books was on Hughes Syndrome and it was a lightbulb moment for me. When I saw the Rheumy I asked him if he had tested he for APS? His response was shocking. How do you know about that. I started to say that I had read it and before I could say where he assumed I had Googled it and decided I had it. Incidentally when I got home from that Consultation having told him I could not and would not work with him, I received a phone call from my GP within the hour. I had to pick up a prescription for aspirin as I had tested positive for the antibodies sone nine months previously and he had not acted upon that information.
Exactly. As it was early on in my illness. I still had the pride and strength to stand up and say how dare you. Years of gaslighting, inadequate treatment, blaming my increasing obeisity for my pain etc I sat there and let a different Rheumatologist tell me that there was nothing wrong with me but Fibromyalgia ands”hysteria.” I waited until I got outside and sobbed. I went hone to my husband and said I need a Psychiatrist I am making myself sick. He was raving mad. I wasn’t I was beaten. He arranged a holiday for us and the first day I got sick. The local GP`s were fabulous, they suspected cellulitis but were not sure. They tested for Lupus markers and bingo.
I returned home to my own GP telling ne the Rheumatologistvwabted to discharge ne. Thankfully she fought my corner and I saw a different Rheumatologist who said no dear you do not have Lupus that is a very serious condition. I asked why St Thomas`s Lupus Unit said that I did have it. His response was these people think they know everything. I totally gave up at that point. When I heard I had yet another Rheumatologist , my fourth in a year I had very low expectations but thankfully he has been a gem.
I agree 100% with all of the comments but would like to stress the comment regarding changing diagnosis. I was diagnosed with SLE in 2015 by a rheumatologist who saw all of my symptoms - breathing issues, fatigue, skin lesions, joint pain etc. and given both hydroxychloroquine and mycophenolate. Since 2021, there has been a change of rheumatologist, who has no decided that I don’t have SLE, I have interstitial lung disease and mixed connective tissue disease. This is because my bloods are negative. Surely, this means the medication is working! It is very stressful to think that my medication is due to be stopped because ‘ I no longer need it’. I still remember how poorly I was before.
Bee I’m so sorry about medication being stopped but baffled that they would stop it when you have MCTD and ILD rather than SLE? MCTD is a serious disease in its own right and ILD is a serious complication. I agree that the meds are working and therefore leave well alone. There’s nothing wrong with a change of diagnosis as long as it’s still treated as seriously by the rheumatologist. Yes it can be hard to adapt to but I’d rather it was the correct diagnosis for me than just left to keep me happy. In 13 years I’ve moved from RA to Sjogren’s to Overlap Syndrome to Systemic Sclerosis and lots of ??? and related diagnoses in between. It’s taken a lot to get my head around each change in diagnostic label. However my treatments haven’t changed since 2020 despite the changing labels and yours shouldn’t either without a better explanation than stable bloods - a proper face to face discussion is necessary first.
Teamwork between patient and specialist always leads to better outcomes than top down decision-making I feel.
Please, please LISTEN to your patient and LOOK at any visible symptoms whether bloods are showing Lupus activity or not! Last year (February) my flare, in the form of a Lupus rash, was not treated for 3 weeks because Rheumy refused to accept it was a Lupus rash based on my bloods! My GP sent photos to Dermy who immediately recognised it as a ‘classic Lupus rash’. But it had spread all over by then and after several courses of steroids (still lowering from last very long course), a steroid injection and MTX injections started in October, I’m only beginning to emerge from the fog, fatigue and other symptoms of this extremely long flare. All because Rheumy relied on blood results and not the patient standing in front of him!
I would also appreciate seeing the blood test results and not just be told they are satisfactory or not, as the case may be.
Don’t use Ana or look for swollen heated joints, yes I have osteoarthritis and osteoporosis but something caused all of this and is making me ill. Respiratory team say inflammation so work with them not against them, help me
’Mild’ lupus does not mean we feel ok - it can mean we feel dreadful, exhausted and in pain.
I want to know the results of my blood tests requested by rheumatology which just go into a black hole. I can only see GP results on the NHS app. The GP only knows about results requested by the hospital if they get a letter! There is no link between the two systems - this is 2023 - get the databases to talk to each other!
Ask about our mental health - depression and anxiety are very common in lupus patients and frequently ignored.
PLEASE, PLEASE, PLEASE can we have face to face appointments? I haven’t physically seen an NHS rheumatologist since before COVID. All I’ve had is phone calls!
Given that the autoimmune conditions are so fluid and if you have one you might have another, maybe the labels need to be re-thought? Especially UCTD which can have more symptoms than lupus but not the RIGHT symptoms to be lupus. Non rheumatologists barely know what lupus is and how it might be affecting other systems, let alone these other strangely named diseases. Nor do our families or colleagues...
Can we clarify what it is called and what happens treatment wise if you don't have a serious flare for a couple years (even though the chronic symptoms persist). Is this remission? is it temporary? should we come off hydroxychloroquine? are we no longer classified? Although it may seem like good news for the Doctor to give to the patient, given all the uncertainty and strange problematic symptoms, the thought of being dumped out of the system without understanding the prognosis better is also scary.
As an example, I had a neurologist look at my most recent bloodwork and say they weren't sure why I had been diagnosed with lupus. They weren't saying that it meant it was wrong, but it made me insecure again about the diagnosis even though I know what the indicators were at the time. What does it mean today?
Also, all this ambiguity has other serious implications like the fact that I can no longer get private medical insurance because of this diagnosis. I live overseas and this has been a huge blow. I feel like the insurers are risk averse because of this uncertainty.
Ask, listen, hear, examine(not just sit looking from the desk) and understand.
I am an individual ,if my symptoms are unique and I dont fit in a box dont dismiss me, or if because I am of lower class or a woman. If my symptoms fit but bloods dont then dont just dismiss me. Dont be contradictory and hypercritical , do not write reports that do not fit the situation and symptoms, and reality of appointment had, if you say to me, write it too,dont create false history or play down my sufferings, refer to someone with more knowledge than yourself if you dont know not dismiss, do the tests you say you are going to do, dont play with my mental health to aid you to put symptoms down to that, if I tell you a drug is helping , listen to me, dont tell me otherwise I know my body and how I feel just because I cant self diagnose, dont just look at bloods for answers especially when not fitting clinical picture, dont tell me you dont have the answers when you haven't even explored other than bloods that dont yield , dont tell me I dont have the symptoms im telling you I have and can prove photographically just because you know there is no one to look at them. DONT tell me to be glad I dont have cancer or that my breathing issues are probably just asthma, or that my facial problems are bells palsy when twice ruled out by facial specialists and body muscle weakness and joint pains and rashes and bumps and more is not part of such. when you give me a drug for a symptom and it does nothing do not then just dismiss the problem as if it is not there ,try to find an alternative.Understand that coming to you is a need and not a choice and I certainly would not be meeting you for no reason.Be honest in all areas and admit when you are wrong.Be empathetic and kind ,trust and respect, and realise the further damage you cause without this to an already sick patient.Dont leave me suffering before you see me, if you give me high dose steroids ,tell me what you are giving me them for, dont just call me out of the blue with no health check before and do not give them to me and then leave at that, see me follow up, note differences or not. Dont tell me I need rashes biopsied and then fail to arrange. dont cover up mistakes own them. Send me personally all test results and scans anything involved with me, dont make me have to chase, why can I not see ,it involves me and I want to be included in all ,it is my health and I want to know results.
Do not use harmful labels, do not assume, do not think a label is a diagnosis and check a gp has done as you've asked.Do not leave a patient fighting ill health to have to fight for appointments, treatment and referrals.Do not use referrals to different department as way to avoid only refer to benefit the patient and refer to to knowledgable people when outside of your knowledge.Do not dismiss just because you dont know.
Understand my frustrations and do not get irate when we do not agree, do not take great offence when I tell you your notes are fictitious, listen to why and what you told me in person ,record our meetings if you like I have nothing to hide but dont treat me as a fool. Dont tell me you will refer me and leave me waiting for years then tell me no that appointment was cancelled.Stop making me plead for help and need to photographically document to prove myself, stop expecting me to tell you all my problems in five minutes when happen over months to years of not being seen. Trust me.Look at what's in front of you. If I have a mouth full of ulcers yet again and am in your office make an effort to look dont just ask can you open your mouth wider from two feet away and when I say no sit down again. When I ask you why I cant move my fingers or toes under own steam but you can bend them dont tell me its probably a soft tissue problem.Dont tell me my rashes are not fibromyalgia but then write on my notes its fibromyalgia. Dont tell me I have no other symptoms when ive not been asked or had chance to speak. Dont write in my notes I have no sensory or bowel or urology issues when ive embarrassingly sat there in your office and told you I have. BASICALLY be a definition of a rheumatologist afford me the respect I afford you.
Ask yourself why you became a rheumatologist , if you really want to help, if you have the morals to do this, if you were held responsible for actions would you still want to do this.
Be human , I may not have a title the same as yours ,but im the same as you, I may not be your sister, daughter or mother but im someones and treat me as if im yours, realise the impact your neglect can have not just on me as your patient but all around.
Dont leave me for others to say they can see how ill I am and that they hope I find a doc who is interested, be that doc ,all docs should be interested or dont be a doc.
Dont ruin another life already ruined by ill health, with adding distress, demeaning lack of trust and causing self doubt when it's clear to all there is a problem. No doc should cause more problems than already there with neglect leading to more health problems.
All these posts here are what we want rheumatologists to know, please read and listen and learn, we are giving you a gift , dont try to box it, we are all in this together and we all need each other , there is a wealth of experience here to be learned from.
For the rheumatologists who give the expected care and understanding and help and treatment whom I have read of here, and of whom it has been hoped I could meet, and wished for me by medical professionals (very sad) thankyou for your kindness towards your patients and for doing your job and please educate your colleagues in the field.
One rheumatologist I was briefly under for about 8 months told me that Lupus doesn’t exist here without +ANA and went off and got me a copy of the diagnostic criteria to drum in his point. When I asked about Scleroderma - which had been mentioned as a possibility by my previous consultant - this chap replied “no you CERTAINLY don’t have that and you really don’t want it either - it’s the worst of them”. As if I even really knew what it was let alone would want it?!
Mind you I recently met someone on my infusion ward who told me she had worked for same chap as a specialist nurse. When she started having symptoms and signs of systemic sclerosis he told her that it was all in her mind - what with her being a rheumatology nurse and “overly fanciful”??! When she persisted about this he threatened to refer her to a psychologist / psychiatrist (can’t recall which) and signed her off as having serious mental health issues 🤦🏼♀️
7 years after she’d first mentioned this possibility - her GP was so worried for her that they referred her to another hospital where she saw my own rheumatologist - who pinched backs of her hands, told her straight away that this was Systemic Sclerosis and referred her for blood tests, nailfold capillary study, lung function and motility tests, echo and then phoned her saying she had diffuse scleroderma. She told my consultant she could have hugged her with relief which obviously surprised my young rheumatologist - until this person explained her 7 years of being told it was all mental health related. This was ten years ago now and sadly my rheumatologist had to pass her on to her scleroderma colleague- who isn’t nearly as good xx
So many off us have been through this process of delayed diagnosis. Yet I still find myself stunned when I read yet another case - the poor nurse. Why are there more women than men going through this biased behaviour still. Mental health was the diagnosis for females with Multiple Sclerosis in the 1920's. So good to hear how we have moved on ?????
Last year February I became unwell with something new and my RD worsened. All mentions of my existing diagnosis of Stills Disease were dismissed with a hump. They persisted with tests for cancer and by January this year after lots or scopey pokies no cancer has been found. I’m still unwell though and no tests relating to Stills have been done. Last time I mentioned it to GP on the one telephone call I’ve had with her she , yes SHE, offered me antidepressants 😤
Debbie I thought this was an April fool ! Blimey this has opened up a can of much needed worms 🐛!!!!
The one single thing I would want to say to a room of rheumatologists is please please consider the language you use as your words can have a massive impact on the patient . A patient who already feels low, in pain and has often reached rock bottom by time they are in front of you .
I would ask them to acknowledge the other symptoms of rheumatoid conditions. I have Adult onset Stills Disease which was diagnosed in 1979 when I was 17. I’m now in my 60s and have suffered debilitating sore throats for the last 40+ years that need pain relief. Many of my symptoms overlap with Lupus too. I feel that just because I’m not on DMARDs that all the other symptoms are written off as hysteria, depression or hypochondria when they are a direct result of my rheumatoid condition.
So many heart rendering experiences have been revealed in this quest and excellent points raised. I have been very lucky with my Drs but that said my greatest journey was trying to learn about my disease. It took a vast amount of energy when I had little to spare and created anxiety that I might not have needed to experience.
I have Lupus Lite UCTD. No information available from the hospital, nor does a quick search on the NHS or NICE site reveal anything- please correct if I am wrong but what did pop up was the following, citing concerns raised by many other researchers about the paucity of information / guidance.
► Undifferentiated Connective Tissue Diseases (UCTD) is an orphan rheumatological condition often observed in clinical practice.
► No guideline on UCTD diagnosis and management is widely accepted or routinely used.
What does this study add?
► An extensive literature search by the ERN ReCONNECT team could not identify any guideline or recommendation on UCTD.
How might this impact on clinical practice?
► Clinicians are concerned about the lack of a proper definition of UCTD, risk assessment as well as monitoring and therapeutic strategies for patients with UCTD.
► Patients with UCTD may feel uncertainty regarding UCTD diagnosis, therapeutic approach and prognosis."
I have found some good information and educated myself but at the early stages of learning, about something so new to me, it would have been very easy to get very poor quality information. For me, information and understanding my disease is fundamental. It is the only way that I can really understand and engage with any consultation, so the dearth of readily available information is concerning. Does Lupus UK even have a designated page on this disease?
I know that I have excellent support from my hospital but it is clear that this is not universal. Perhaps, simply providing good quality information on UCTD, at a national level as well as local would be one small but not insignificant step to support people in what is undoubtedly a very complex area of medicine.
There needs to be more help for us Lupus-like (not necessarily light🫣) UCTD patients who sometimes find it impossible to get any help at their local NHS CTD clinic.
On World Lupus Day and in Lupus Awareness Month, more could be said about this condition.🦋🐺💪💜
Even some on this forum, with a SLE diagnosis, may think of UCTD as completely different disorder, but is it?
For some of us, we have the symptoms of lupus but just no positive anti-dsDNA result. It is as simple as that. Some people in the past would have been diagnosed with seronegative SLE.
So it would be great if we could all stick together on this. It is easy for UCTD patients to feel not quite so good, because the emphasis is on Lupus, but our symptoms can be bad as well.
It might be just that we have not had the opportunity for as many immunological tests to be done. My GP said they could not be repeated on the NHS if negative first time.
My ANA when tested was strong positive, but this with symptoms, seems to mean nothing to some rheumies. Instead I was told all my symptoms in my head.
A poor joke 🤨 no doctor should be allowed to speak to patients like that, and there was another doctor in the room at the same time too - maybe intentionally..but then they both are as bad. The other is more junior, so stays quiet. They set such a poor example too. This behaviour would not have been allowed in other workplaces.🙄😵💫
Getting back to UCTD:
More attention could be paid to the description of our symptoms and them not to be downgraded by the second rate descriptions they are given.
For example:
Why is our butterfly rash, sparing the NL folds, just referred to as a red rash on the face in the very limited UCTD literature?
The word 'malar' can't be used because in the olden days, we would have then been diagnosed with Lupus. It plays on the conscience and worries doctors if caseloads might be increased if we were given consideration that is comparable.
Some UCTD patients possibly really have MCTD with even more symptoms.
It is just bloods don’t allow diagnosis of it yet.
I have read somewhere 'suggested UCTD criteria', thankfully not accepted, that requires ANA to be positive on at least two occurences.
This proposed criterion should be thrown out the window fast. It would be a very backwards step. It is not required for Lupus. There is already too much focus on blood tests, when observations made regarding these prove the science is still largely unknown.
Meanwhile the way CTD is defined could be improved. It seems logical to see it as a 'whole overarching entity' with many more different parts than there are conditions that have been named. The labels given are not always helpful, new symptoms making patients continually question if there is another condition they should be diagnosed with.
Lupus predominates so the whole thing could be called a Lupus Sprectrum..although multi-facetted and multi-directional.
Hopefully one day it can all be mapped out and understood more fully.
Maybe we are only a small fraction of the way there.
The 2019 Classification criteria are intended for research purposes, they were not meant to be used for diagnosis.
Both diagnosis and research are important at the end of the day. In terms of diagnosis, many people are being failed at the moment due to blood results being too heavily relied on, and conveniently used to control caseloads in an over pressurised NHS.
Research seems to focus on lucrative new drugs, and neglects investigating the fuller picture of CTD. This may be self-defeating in the long run, as the entirity of the situation is not yet well understood and only part of patient population is targeted.
Recognise and communicate to other health professionals that for some patients with systemic autoimmune disease that ESR (as well as CRP which more know can check for infection but not reliably for inflammation) may not be raised despite there being extraordinary levels of inflammation and suffering.
Some medical text books, used to train students, actually need to be rewritten as they seem to imply ESR is a definitive test.
Here is a paper discussing the limitations of these tests.
Ensure as an alternative, ultrasound imaging is available, so this can be used immediately as another way to check for inflammation. Patients should not have to wait weeks and have to go to another clinic for so simple a test.
It is infuriating when GPs who don't normally treat us, say we can't have inflammation because CRP and / or ESR are not raised.
Being diagnosed is a big deal. No matter how fortunate we might be to still be mobile, working, enjoying life, it is life-changing news. Many of us will have waited a long time to get answers. Many of us will have lost work, hobbies, friends along the way. So it would be really nice if you remember this when diagnosing us.
So many amazing question! Also if I may add: do they find genetic testing important? Specifically for HLA-D3 (B8) and HLA-DR2. Those alleles of HLA gene group are very common in incidence of lupus and are part of normal blood analysis in other Western European countries. I am generally interested to know rheumatologist thoughts on that. Thank you
I belive that a lot of issues are caused by a lack of time and under resourcing of rheumatology departments. However it would be helpful if rheumatologists gave a brief summary at the end of the appointment. I often have to rely on my rheumatology letter to my GP to find out but even then it can be very vague.
Hi, yes the test was negative but they did find diverticulitis during a scan which accounts for some of the symptoms. My own research leads me to autoimmune thyroid issues and that’s a whole new Pandora’s box I fear.
I’m accepting how I feel now as my new normal and will only pursue medical help if it all becomes unmanageable . Wishing you good days.
I know I'm echoing what a lot of others have already said but:
Just because my Lupus is "mild" in terms of criteria, when you've lived with symptoms and pain for many years it doesn't get easier. You still have good and bad days. Don't make me feel like a hypochondriac just because you've seen sicker and I wear it well.
And adding to this, remember for some people they have very few people or no one in their lives who take their illness seriously, or support them. You may be the only person they see who has some understanding of what they're living with. Take us seriously and try to validate what we are going through.
Please write accurate clinic letters and DO NOT SAY "She's feeling/doing/keeping well" when I've said NO SUCH THING. That's your opinion after having seen me for 10 minutes and if I was feeling well I wouldn't have come with a list of symptoms that affect my quality of life every day. This is dismissive, patronising and quite frankly infuriating.
Just because test results are so far normal, it doesn't mean I'm making it up. I know my body and I know when I'm in pain or feeling unwell.
Or just that they judge on looks. If tests are so important because they're factual/objective, deciding how "well" a person looks is subjective. It beats me how, number 1, it's appropriate to say it but number 2 it should not be in a "clinical" letter xx
If you say you need to see/phone me in 4 months for a follow up. then please make it as near to this as you can, telling me 4 months then eventually I get a letter 12 months on is not good enough x
I support this request entirely. I’m under multiple specialists and awaiting major abdominal surgery for scleroderma GI. My rheumatologist said I’d be seen this month (3 months since she phoned me) and I phoned to see if this would materialise but no I’m just on a long clinic list. The chap I spoke to just said “just email her to tell her about your GI surgery” knowing I also get a medication prescribed directly from her. I did this and had a lovely reply, advice to stop my Mycophenolate at least 3 weeks in advance but nothing about being seen face-to-face. I’m not criticising her for writing that she will see me in 3 months time - but surely she knows that is fact I won’t?
Most of us aren't idiots and we are naturally curious about our condition and our treatment. We may not have medical degrees but a reasonably intelligent and educated adult is capable of research and differentiating quality information from bunkum. Please don't patronise us by telling us not to Google. If I hadn't done my own reading into my condition I wouldn't know a thing about it.
I totally agree with everything that has been said treat us as intelligent individuals not what comes out of a text book.We know our bodies and what we feel.
Having this condition takes everything from you physically and mentally.
Often all we need is to be believed and listened to.
We are sent to a Rheumatologist because of Lupus or Sjogrens or something else, we don't always know what help we can get or what other consultants we may need. We ring the helplines when something happens out of the ordinary but are then sent back to the GP more often than not. They then sort out who to send us to or send us back to Rheumatology. Could we not get one point of contact a team of consultants all working together and talking to each other when we see a Urologist, Dermatologist, Nephrologist, Neurologist etc. We need joined up care. GPs don't have a lot of time or specialist knowledge. I've had temporary patches of help from GPs, some excellent care too. It's so tiring though retelling our symptoms, medications etc. every time we see someone new. I feel like taking a printout with me with my story so far and letting them read it prior to seeing me otherwise half your time is taking up with telling the same thing again and again and your appointment time is eaten up. I agree too we don't always fit the boxes of typical Lupus/Sjogrens/Joint problem and are not taken so seriously I feel. Case in point and the Fibromyalgia thing. I got that diagnosis because of joint pain with no inflammation. Anyway digging just a little deeper and a lot of my problem was undiagnosed joint hypermobility syndrome. Different problem, different physio etc. We just need a little more time with experts to maybe dig up a real diagnosis rather than a convenient, quick but wrong one. All we want to do is stay out of A&E and hospital on the whole and get ongoing care that keeps us as healthy as possible rather than going into a crises and needing emergency help and being pushed from pillar to post and feeling ill and tired whilst doing it. It does not help our health in any way.
The referral pathways available are not always sufficient either.
They can be really narrow.
Example:
1. For headache affecting my eye, I was referred by my GP to Giant Cell Arteritis clinic.
Result- A scan and a discharge.
My feeling - I was not confident that if I had vasculitis, that it was in the area of my head where they do the ultrasound.
There are similar blood vessels nearby, but the temple is the only place on the head, they scan - my issue was a few centimeters away.
2. My Rheumy then suggested ENT referral which GP made.
Result- the GP's ENT referral got declined.
But this was 3 months later..not immediately.
My feeling - I don't understand why the referral could not have been declined straight away, if they were reviewing as the referrals came in but it seems as if they did not prioritise this task.
3. Immediately, my GP then made a Neurology referral instead.
Result - Although I have different neurological symptoms, this became a Headclinic clinic appointment.
4. The Headache clinic appointment ended up being a telephone appointment with a GP with special interest (GPwSI) in headaches.
The GPwSI I felt was tasked with identifying my headache using the latest NICE Criteria:
Result- Because the headache had been one side, they said it was a migraine.
Thankfully, the original headache had now gone on a short course of steroid.
My feeling - Over the course of the year, I could well have had many different sorts of headaches. I had one-sided migraines on a few occasions affecting the other side, but the one I was referred for I thought was not migraine.
The chart did not help, and my GP had probably thought through all of this at the start anyway.
It was like a merry-go-round.
My feeling -
I probably needed an MRI but when I did get one of my orbits around the same time, it was not allowed to capture the area a few centimeters away where I banged my head in the car several years ago, which resulted maybe in regular headaches sometimes affecting my eye.
Basically, everything was a waste of time for everyone.
Some Celiac patients dont have gut symtoms. per se. eg early fractures , found osteoporosis and further investigations they were Celiac. Malabsoption was causing all sorts of issues. Even infertility. x
Ex-NHS employee and I am outraged at how I was treated by the rheaumatologis.
Please please listen to us and don’t go on bloods. I was diagnosed with cutaneous by biopsies and now I am walking in crutches. 13 months ago I was working on the wards as an OT and running ultra marathons. The rheumatologist said I had fybromyalgia and treated me like a woman who had no clue of her mind or body!
Now I have been labelled with fybromyalgia the lupus has been over looked and they are saying that my dizziness and all the back pain is fybromyalgia.
I have had to give up my life up and I have even made an attempt to harm myself because I have no quality of life anymore.
Do you think that maybe the best way to diagnosis for joint issues is to try to rule out joint inflammation by trialling drugs?
Lupus is such a multi factorial disease that even a small bit of rest bite from one of my issues would be a god send. Sorry we don’t fit into your boxes nicely but I would never have treated my patients the way I have been treated. An angry 48 year old ex NHS employee who has been dumped and forgotten about after working all through Covid!!!!
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What medication works for you? 
When you have a flare up what are the two things that bother you most usually?
lupus, pain in the you know what !!
Lupus like symptoms but not lupus according to rheumatologist 
