Sorry it’s going to be a moan about my appointment today. We are so lucky to have the NHS but today I’m feeling rather frustrated after a really unhelpful appointment. I have been on hydroxychloroquine since the beginning of October when I was diagnosed (negative blood test but diagnosed on symptoms and rash) and have seen little yet fragile improvement. I saw a registrar - in fact the fourth different person I have seen since being diagnosed so had to go through it all again. He then started asking me if I had a long list of different symptoms, I realised he was reading the list off his phone! He then said he wanted me to wait another 3 months on the hydroxychloroquine to see if there was any more improvement - I explained that 3 months ago the consultant had said if there was no significant improvement they’d change my meds but now I’ve got to wait another 3 months. I’m still not back at work, still having to rest each afternoon and was so expectant of changing meds and hopefully seeing an improvement.
I think the biggest problem I had though was that he said as I wasn’t presenting lupus symptoms and as I hadn’t had a positive test he couldn’t prescribe stronger meds. I explained that the consultant had diagnosed me from my symptoms and rash but he wouldn’t listen and as the consultant wasn’t there to check with he and another registrar decided that they wouldn’t follow the consultant’s recommendations. He also said that as he hadn’t seen the evidence of pericarditis (I had pericarditis 2years ago which was when symptoms started) recently and as the cardiologist had discharged me (to rheumatology!!) he couldn’t prescribe the medication.
I just feel that I have not been listened to or understood and as I don’t fit with his list of symptoms he was reading he’s changed the diagnosis. Maybe I’m being a little emotive but when you pin hope on getting somewhere with possible changes in meds to get some quality of life back it is just rather soul destroying. Or maybe he was just not understanding lupus and trying his best?!
Sorry! But actually feel better for moaning! Thank you lovely people for listening.
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Yellow5
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I'm sorry to hear that you had a frustrating appointment where you didn't feel listened to or believed by your consultant. I understand that this can be very disappointing, especially as you want to get control of your symptoms and it feels like no progress is being made.
May I ask how long you have been taking the hydroxychloroquine? It usually takes around 3-6 months to kick in, but I have heard reports from people who said they didn't feel the full benefit until after around 12 months of being on the medication. Hopefully if you stick with it you will notice it having a bigger effect. Consultants will want to try and limit stronger treatments if they can because they come with additional side effects and monitoring.
Better out than in, Yellow5! There is a range of blood tests in the SLE guideline, not just one:
ANA level above laboratory reference range
Anti-dsDNA antibody level above laboratory reference range (or > 2 fold the laboratory reference range if tested by ELISA)
Anti-Sm
Antiphospholipid antibody:
any of the following: lupus anticoagulant, false-positive rapid plasma regain (RPR), medium or high titer, nticardiolipin antibody level (IgG, IgM or IgA), anti-β2 glycoprotein I (IgG, IgM or IgA)
Low complement:
low C3, low C4, low CH50
Direct Coombs’ test (in the absence of hemolytic anemia)
....if ONE of these is positive, plus at least three clinical symptoms eg rash and pericarditis plus one, that is the basis for the SLE treatment pathways, detailed in the guideline
Inability to work counts as a severe reduction of QoL....I don't know if a GP can order all of these tests, but worth an appt, guideline in hand? Be well xxx
Following the appointment yesterday the doctor I saw has phoned. He wants me to stop talking the hydroxychloroquine ‘because it’s good news , you don’t have lupus.’ I asked why he thought that and it’s because my bloods weren’t positive and I haven’t responded to the hydroxychloroquine and hadn’t felt great on prednisone. I’m having another full bloods done but if they are negative he is going to discharge me. Feeling totally floored and at a loss at what I should be doing.
He said he thinks it’s chronic fatigue but when I questioned about the photosensitivity he told me to wear a hat!
My main symptoms are/have been pericarditis, joint and muscle pain, Malar rash, worsening photosensitivity, swollen glands, hair loss, shortness of breath, brain fog ....
I’m really not sure what I should do next - other than get those bloods done! I guess I’m thinking request a second opinion, stop taking hydroxychloroquine and see what happens and keep a comprehensive diary of symptoms?
I am so sorry that you feel let down, I know that feeling very well. Keeping a diary is a great idea, sometimes just writing it down helps you to focus. Remember to put down what you eat and drink as well as how you are feeling and where you are.
The NHS is amazing in a lot of circumstances but sadly, as we read on here, if you're a bit 'difficult', we get the 'it's in your head' or 'your depressed' or worse!
I only started to get better when I got in front of the right specialist at the LLC, and I thank God everyday that I found Health Unlocked who pointed me in the right direction or I truly think I'd still be struggling.
I wish you strength to keep on fighting and a hug to tell you that you're not alone.
Thank you! You’ve made me cry but from being understood not out of frustration this time!
I’m writing it all down and may actually write to the consultant explaining that I don’t feel I was understood by the registrar and that he hasn’t correctly relayed the information to her. I know I’ve had some benefit from the hydroxychloroquine so am a bit scared to stop it!
Dear Yellow5, oh how my heart aches for you, and sadly nearly everyone of us here has had the experience you are having/had. I want to strongly reassure you, that what you are feeling is real, I bet nearly of us at one stage presented as you do, sadly, the journey to a diagnosis for Lupus can be long, frustrating, soul destroying, and impacts severely on our overall well being.
It took 12 years in my case for diagnosis, and not once in that time did I produce a positive blood result for Lupus, not a one, but I did eventually have a positive Antiphosolipid test, 2 x 12 weeks apart. What you need is a specialist who will look beyond test results, and take on board you as a person, your other symptoms.
It may not be Lupus, there are many conditions that bring about symptoms you describe, and there is no easy way to get to a diagnosis, than having self belief, it is not your problem that the doctors for now are unable to diagnose you, so if you can bear it, I urge you to keep knocking on doors, mainly your GP and everytime you see him or her, state clearly that this is impacting on your day to day living, and you need his or her help to keep pushing on for diagnosis.
I don't know how you are fixed financially, but if you were able to go private, a second opinion is your right, the NHS can work brilliantly, but I am sad to say in complex auto-immune disorders it can be pretty hit and miss. If you contact Lupus UK, they could perhaps recommend a specialist near you.
Good luck, remember your not alone, we understand, and are right behind you.
I read your message just after I had emailed the secretary of a consultant at another local hospital, whom I have been recommended by a friend. She saw him privately initially and then under NHS. I’ve just had a quick read up on him and he also has consultations at the London Bridge Hospital too.
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