Hi there, in December last year my Dermatologist diagnosed me with urticarial vasculitis and clinical subacute cutaneous lupus and I started on Hydroxychloroquine. This medication appeared to make my symptoms worse and so I stopped taking it, my Dermatologist then referred me to a Rheumatologist so I could be prescribed different medication that she was unable to prescribe. I waited 11 months for the appointment (which was this morning) only to be told that although I have all the symptoms to match a Lupus diagnosis my ANA levels were not positive and so there was nothing he could do for me and told me I don't have Lupus! I queried his decision and he was so rude, dismissed me and told me to go back to my GP to get another referral to a different Rheumatologist. He tried to tell me that my symptoms may be down to IBS and to manage my symptoms with diet and continue to take painkillers for my joint pain!
Never heard anything so absurd! I've had IBS for 15 years and hardly ever get any episodes. I wasn't aware that IBS could cause the following symptoms?
Red raised rash over cheeks, upper torso and back
Hives
Joint pain and swelling
Chronic fatigue
Migraines
Mouth ulcers, dry eyes, pain in eyes
Easily bruised/long lasting bruises
I've left a message for my Dermatologist to discuss the outcome of the appointment but I am so upset. Where do I go from here? I am unwell on a daily basis and close to losing my job as the fatigue I'm experiencing is so severe I can't get out of bed some days.
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Apple86
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Oh apple, I'm really sorry what has happened at your Rhrumy appt!. It's particularly cruel that we wait so long and then can still come up against a brick wall re diagnosis and nasty attitude!. There's no excuse for this and I'm not surprised your in floods of tears, it will take a while for you to recover from this specially as your so vulnerable nearly losing your job!.
I m glad your asking the Dermy what to do and you can also ask your GP to refer you to another Rhrumy for a second opinion!. Also see the citizens Advice as they will help you claim benefits if you do lose your job !.
You are so right that IBS doesn't produce those symptoms and so you must fight on when you feel stronger!. Take time out now but I'm sure you will be angry soon. We go thru these phases and you've done tears first!. All the very best and keep us posted. X
I am sorry you experienced this; I believe a huge amount of us on here have had the same happen. One of the things you should do, soon, is contact the hospital's PALS people. They are patient liaison when there is a complaint about a doctor. You should call them first and see what they say. Believe it or not, doctors are not allowed to treat patients like crap; I worked for many for years as a medical secretary and if patients don't complain the drs are getting away with it. Don't be afraid you will suffer ramifications from complaining, you won't. Please think about reporting him, so at least he may not get to treat another patient the same way again.
I wish you luck and IMHO you sound like a totally typical lupus patient to me; + or - ANAs don't always mean anything. People WITHOUT lupus get a positive result and vice versa; false +/- are common.
So very, very sad for you. It's just awful when this sort of thing happens - many of us here have experienced similar, so you can be sure you're not alone. I know this won't make you feel any better just now, but hopefully it will in time. I was devastated when it happened to me and - several days later when I felt up to it - I complained! I initially contacted the consultant's PA to politely explain my 'disappointment' at the review by the registrar which eventually filtered through to the lead consultant who asked to see me personally. He is excellent, apologised on behalf of his registrar, and continues to look after me. Was your rheumy head of the dept. (or a similar 'big cheese')?, if not perhaps your dermatologist could refer you to another rheumy in the group? Of course, all Drs are entitled to their opinion, but this seems way-out in terms of your symptoms. Good luck and please let us know how you get on.
Thank you all so much. I have been crying on and off all day, but I plan to speak to PALS about this particular Rheumatologist as his manner with me was just totally off, telling me if I didn't like his decision I could get a second opinion but would be wasting my time. I've left a message with my Dermatologist's PA and will wait to see what she suggests re further investigation. It just baffles me how I can be diagnosed by one specialist but have that quashed by another. He has the power to allow me to receive the medication I need to stop me feeling so utterly rubbish every day, and he is withholding it purely on the ANA result
I'm so fed up of life at the moment, and just want one day where I don't wake up feeling so drained. Feel like giving up 😓 x
It sounds like a disheartening experience. Did the doctor explain his reasoning? A rheumatologist would not dispute the diagnosis of subacute cutaneous lupus, I wouldn’t think. In fact, they usually refer to dermatologists for diagnosis on skin involvement.
Is it possible the dermatologist sent you to the rheumatologist to rule out systemic lupus? Also, ask what medication the dermatologist is unable to prescribe and why. Dermatologists are experts in skin lupus and at times use immunosuppressants, which carry more risk than what you were on.
Maybe your GP and dermatologist can get clarification for you. The doctor really should have provided an explanation. Very unfortunate.
Hi Apple, I'm so sorry you're going through this. I've had very much the same experience from my rheumatologist and, like you, I left in tears. Fortunately my husband was with me and was completely appalled by the lack of interest and the attitude of the 'so-called' expert who wasn't even prepared to listen to anything I had to say and talked over me the entire time. The letter he wrote to my GP following the appointment was a total misrepresentation of what had been said and done. I have an appointment in a couple of weeks at a different hospital and really feel that might be the best action for you too. Good luck with everything and please keep strong xx
Desperately feel for you, sending you best wishes and strength in this hard time 🙏
Oh poor you it’s awful isn’t it. I had a similar experience with a gastroenterologist a few weeks ago. He was so grumpy from the moment I walked through the door. He was an hour late in a hospital far from my usual one, he called me in by my Christian name despite having never met me before - and he said “why are you here? I’ve never seen you before have I?” in a very accusatory manner. It was so upsetting.
Basically he was blaming me for getting sent a follow up appointment with him even though the letter had been sent to me in the post with his name and date and the hospital on it? I did phone the main department and request follow up as I was struggling with a gastroenterology medication. My GP was clueless about how it worked and so I thought I’d phone having been promised a follow up after various investigations - and this was just the doctor and hospital I was sent to. Not my fault or his - just an admin mess.
He told me my stomach issues were just functional and that I should be pleased at this because at least they aren’t structural. He tried to explain what’s “functional” meant although I told him I have Sjögren’s syndrome plus overlap CTD. He then tried to give me an info sheet on IBS even though I have underlying autoimmune diseases and am now borderline diabetic and have been on a strong laxative medication licensed for severe IBS, issued to me by his colleague 2 years ago for bowel dysmotiliy relating to my autoimmune diseases?! I declined to take this sheet very firmly!
So I totally relate and my thoughts are that speaking to any patient rudely and unkindly is just completely unacceptable whether I have IBS or whether you have Lupus - or not! If we live with debilitating symptoms all or most of the time then this should at least guarantee that we are spoken to respectfully - even if the doctor is unable to confirm or exclude a diagnosis.
Having been seen and been given completely contradictory opinions by two out of three colleagues from the same connective tissue disease team this year - if I were you I would immediately request a second opinion. It would be a good idea to enlist the support of your dermatologist in finding a better rheumatologist who can treat you with the respect you deserve.
I feel for you. I had an almost identical appointment to you, right down to the IBS, a few months ago. I did as MEGS did and went straight to the lead consultant with my issues. I was lucky in that I had the support (and witness) of an amazing nurse who was equally horrified .
As per MEGS I had an appointment arranged very swiftly when i started listing my issues for complaining and my lead consultant apologised and sorted everything.
Stay strong and don't let the sh*te ones get you down. Xx
How disappointing, some rheumies are unfamiliar with SCLE and there us a possibility that you have overlapping autoimmune diseases like Sjogrens which I was diagnosed with which compounded my symptoms.
So went back to rheumy dept. to deal with an array of symptoms. As my rheumy dept specialised with RA & not with lupus sjogrens I sought a second opinion privately with specialist in their fields. I went armed with bloods photo's, symptoms & diagnoses & current meds & a list of key questions.
I feel for you as they (docs) sometimes don't or know this area of autoimmune & our struggles when under medicated & trying to work, etc. I am now on an combo of hydroxychlorquine & mycophenolate, etc. & at times still struggle with fatigue & aches & pain & really struggle with work & life balance ...
I sorry to hear you didn't get on with hydroxy... instead of waiting another year as meds take time, see if you can ask dermy to consult with rheumy dept in regards to prescribing another autoimmune meds. they shouldn't really delay further treatment any longer....it would be nice if they just consult with each other....or if depending where you live refer you to a lupus specialist or centre of excellence.....
Dear Apple86, I am so very sorry to read about your truly awful rheumatologist appointment. The latest research confirmed that around fifty percent of people with lupus had great difficulties in being diagnosed, regardless of whether their form of lupus was mild, moderate or very severe. I agree with other members that you need a second opinion. Although expensive, the fastest way to do this is by going private but you can run your NHS requests alongside. I have a couple of suggestions if you would like them. Once you have a diagnosis, many work closely with the NHS for your ongoing care. A diagnosis should give you access to corticosteroids, oral or even by infusion and medications such as mycophenolate, which can be life changing. My very best thoughts are with you, Lily
Hi apple am so sorry you was treated in such a cruel way and honestly that rheumatologist needs to be sacked as he has no rights treating a patient that way. Good riddance to him as you can now get a second opinion and another Referal to see someone else. What a load of nonsense about IBS. Where has this horrible little man been trained. You need to keep a diary of symptoms and get all your medical records. I have all the symptoms of lupus and always have a weak positive blood test result. The consultants don’t take us seriously unless we are seriously ill or dying and the lupus symptoms scream it’s lupus you silly man. 😂. Ask also to see a immunologist as that may help you. I will let you know if it’s worth seeing one as I am waiting to see a immunologist specialist after Christmas. Chin up we just need to find you someone who is better qualified and a much nicer human being. No wonder you are traumatised. Take care. J😂.
One of my symptoms is unexplained bruises, which I've had blood testes for with no result, also itchy, and v. Sore eyes, I too have on some occasions been told that I don't have lupus and on others as a. N. A test is only mildly positive that it is very unlikely, worst symptoms are light sensitivity and joint, muscle and bone pain, I have photos of the light sensitivity and finally a diagnoses for that but factor 50 sunblock does nothing to help, my joints aren't swollen so no proof of that, been diagnosed as myalgia but no treatment offered, hope you find a good rheumatologist soon.
I am so sorry for your bad experience. Unfortunately lots of us on this site have had similar experiences. Some rheumatologists won't look beyond ANA results. Mine said "95% of lupus patients have a specific antibody; you don't have it therefore you don't have lupus". That was the end of the story as far as he was concerned and he completely ignored my various symptoms and the fact that I have a history of auto-immune diseases plus a family history. Like you I went away feeling a mixture of anger and depression. Luckily I am now retired so I cope as well as I can and just stay away from doctors. I am currently using diet as a means of controlling my symptoms as well as I can. As other people have said, please don't give up. Ask for a 2nd opinion as there must be other rheumatologists available. I hope you find help soon.
My that my told me that if you are diagnosed with lupus even ince because of high ANA levels, then no matter if your levels drop or not you still have lupus. Levels can change, but that doesn't mean the lupus has gone away or never existed.
Some docs are rude when it comes to lupus because they don't know much about it and we insult their intelligence when we question them. If they feel the need to be so high minded, then they need to study up more on diseases like lupus to prove to patients that they are worthy of being trusted and respected. Stay strong and be patient.
Hi, oh my heart goes out to you because I had a very similar experience a few weeks ago where the new Rheumatologist told me that there was nothing wrong with me, based on one blood test and no examination or history. He told me that my macular oedema caused by his over prescribing Hydroxychloroquine , was an hysterical reaction. Thankfully I now have the opticians report which verifies it and four more blood tests showing high CRP, ANA. dsDNA so my GP rang to ask advice and was told my a different Rheumatologist ( ironically the one who first diagnosed Lupus ten years ago) to put me back on the medication. Appointments like you have experienced cause significant distress, depression and despair. It took me so long to stop playing his arrogant, ignorant words over and over in my head. I am so very sorry that you went through it too. The good thing in terms of your care is that you have a Dermatologist who will support you. I hope you get to see a professional Rheumatologist and good luck with PALS. Xx
I am so sorry to read this. How awful! Unfortunately it is not uncommon here though. We've all been through similar experiences.
I know I have. Many times. It's so cruel to be unwell and then be treated like this, by those who are supposed to help us feel better. It causes so much extra stress and delays in getting treatment!
I would definitely ask for a second opinion.
I ended up seeking a second opinion privately and I am so glad I did. But I know not everyone is so fortunate.
If you live in England, you are entitled to a second opinion, from a doctor of your choice. Do you live near any of the LUPUS UK Centres of Excellence for lupus? If you do, I would highly recommend that you seek a referral to one of them.
If you have been diagnosed with SCLE, your Dermatologist should be able to prescribe medication though.
I was diagnosed with SCLE (but this turned out to be wrong), but I was put under Dermatology led care, as it is mainly the skin that is effected - although with SCLE you do experience some systemic issues too. So, even though my second opinion said I have SLE, I am still under NHS Dermatology led care and they strictly speaking control my treatment plan.
So, try speaking to your Dermatologist first and if no joy, contact your GP about a second opinion.
I'll attach the LUPUS UK Centre of Excellence info.
I am so sorry to hear that your appointment didn’t go anything like what you may have planned and are disappointed by the treatment you’ve received from the rheumatologist you visited. I am glad to read that you will be speaking to PALS about this matter.
An ANA test only confirms whether or not a person has an autoimmune disorder, it does not confirm if a person has lupus.
dsDNA antibodies are very specific for lupus (as they are not typically seen in any other condition or in healthy population) only approximately 60% of people with SLE will test ‘positive’. Therefore if someone is positive for these antibodies, it often means they have lupus, but if they are negative it does not necessarily mean they do not have lupus. For more information, you can read our blog article on ‘getting a diagnosis of lupus’ at lupusuk.org.uk/getting-diag...
Skin involvement, joint pain/swelling, migraines, oral/nasal ulcers and extreme fatigue are all symptoms commonly associated with lupus.
You are entitled to get a referral to a different rheumatologist. To learn how to change consultants, read our blog article at lupusuk.org.uk/getting-the-... . If you would like information on a lupus consultant in your area, please send me a direct message or email me at Chanpreet@lupusuk.org.uk
Thank you so much for such helpful information Chanpreet! I'll be sure to have a read, I just need to find the energy to keep fighting, and I'm sure this will help x
I had same experience with ruemotology, was told you have just got skin lupus and osteoarthritis given a booklet and that was it. Hear it from time to time although been tested for and have been diagnosed as photosensitive and have two consultants dermòtology on my case as nothing is working and lost count of different treatments tried currently awaiting next move when latest round of tests bloods again urine test where had to do in dark and cover sample with tinfoil to keep light off. 🙁
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Update on my rheumatologist appointment 
Hurrah an appointment with rheumatologist, but I’ve got a fever
Rheumatologist appointment in a week and a half
First consultant rheumatologist appointment - tomorrow!
