Diagnosis of lupus but feel completely fobbed off by my rheumy!!

Sorry this is going to be a long post but I just need to vent!

I was referred to ENT by my GP due to swollen eyes/face every day ENT ran tests and started me on a course of steroid nasal sprays. These helped but as soon as I stopped taking them the symptoms returned. On my next visit to ENT I saw a different consultant who was lovely and asked me loads of questions about my general health not just in relation to ENT. He believed after hearing my medical history that my symptoms may have an auto-immune component and ran some blood tests. These blood tests showed there was something auto-immune going on and I was referred to rheumatology. My first appointment was back in April and was with the rheumatology nurse, she took my medical history and some of the things I told her, sun sensitivity, hair loss, raynauds etc etc made her call in the rheumatologist who ordered a raft of blood tests. He asked me a few questions and told me it was probably nothing and he had no idea what the eye/facial swelling was and that it would probably go away by itself (at this point I had had it 12 months and it did not appear to be going anywhere!!) The rheumy advised if the tests showed anything they would call me back to clinic.

6 weeks later I was copied into a letter sent to my GP advising due to the blood test results and my medical history that the rheumy was making a probable diagnosis of SLE and sjogrens syndrome and they were recalling me to clinic. Finally I thought I was getting somewhere. I eventually received an appointment but had to wait 6 months. I was disappointed that I would have to wait that long but I understand that NHS is stretched and I decided to use the 6 months to educate myself about the probable diagnosis.

Well I finally saw the rheumy on Thursday and it was a waste of time, I had a grand total of 4 minutes with him where he told me my SLE was only mild. My symptoms have gotten worse over the last 6 months and the nice summer we had killed me and I spent most of the sunny days lay on my bed in pain. I tried telling him how things had changed but he was disinterested to say the least. I tried to tell him that my sun sensitivity was the worst it’s ever been this summer and all he asked was did I get a rash on my face. I tried explaining that I get an all over rash that looks like prickly heat but doesn’t itch and I have also started getting a more localised rash on my ankles where the spots are larger and itch like mad. His response was “oh right, but do you get a rash on your face.” I then told him about the muscle pain that I’ve been suffering with and how it can be so bad it wakes me up in the night and I have to take pain relief to be able to get back to sleep. His response was “do you mean cramp?” No I mean muscle pain. “Muscle pain is nothing to do with lupus, take some magnesium that might help.” I was shocked everything I’ve read about lupus advises patients can suffer joint and muscle pain and here is the doctor telling me that it was nothing to do with lupus. That comment threw me off my stride completely. I never got to tell him anything else as he told me he’s going to monitor me for the next 6 months and then put me on hydroxy. By monitor he means he’s not going to see me until my next appointment. He ushered me out of the room and gave me a leaflet about hydroxy so I could have some information about it before my next appointment and he told me if I feel that my symptoms are getting worse I can phone the helpline and get it started sooner. He never gave me a helpline number I thought maybe it was in the leaflet he gave me unfortunately I didn’t check as the nurse called me in for bloods and I didn’t get to look at the leaflet until I got home.

I feel really let down by the NHS, I know my condition has changed in the last 6 months and I thought I would finally get some help. How wrong was I? The rheumy did not at any point actually tell me what SLE or sjogrens is and did not offer any practical advice. I have emailed the hospital’s query team to see if they can give me the helpline number.

If you read this overly long post thank you, I'm so glad I found this site as reading other people's post and questions has really helped me over the last few months.

12 Replies

  • Hi there and so sorry to hear about your diagnosis and appointment

    It sounds like a very disappointing appointment. We build ourselves up for these long awaited appointments, and if they turn out to be so disappointing it's so deflating and frustrating. You should have been given more time to go through your symptoms and to have the opportunity to have things explained/ ask questions. Did he explain why he hadn't started you on hydroxychloriquine now?

    I wonder if it's worth you going to your GP and exploring the possibility of finding another local rheumatologist, preferably one who specialises in lupus. Also, can you get a referral to a dermatologist for your skin rash (does it stay long enough)? Or take photos of the rash(es) for future appointments. I get a prickly heat type rash which has been diagnosed (by biopsy) as urticarial vasculitis. It was this diagnosis which led to my other diagnosis of lupus and Sjogren's. My treatment can vary and can sometimes be tailored to the urticarial vasculitis flares.

    Good luck.

  • Hi there, well after reading your post I had to reply. I too have been labelled as having a mixed connective tissue disease of sjogrens and sle. I also have coeliac disease and small fibre neuropathy caused by the sjogrens. It is good that you have been seen by the rheum and had your bloods done. However he should not have ignored your joint pain, in particular the knees elbows and shoulders are affected mostly in me with burning pain. I also have extreme fatigue and after my second appointment was put on hydroxychloroquine. I have been on it for 6months and it is slowly helping with the fatigue but the joint pain in mostly gone. I have had to reduce my working week to 4 days as I work on computers all day and my eyes were so strained. The arthritis research UK is a great site which will post you out pamphlets on all the conditions and medications. If you really feel unable to function your gp is the best bet to help you and get you another appointment at rheumatology. If you have any further questions I hope I can help....please ask!

  • hi there i have had this too/cant remember when it started but began with nasal sores(inside)and swollen (bone)and tip of nose.doctors gave me various sprays which only gave short term relief and I think it was last December I finally got a referral to ENT.so saw the consultant who arranged a scan.i was told the results in a letter which said "my sinuses were normal" and nothing more.eventually my doctor quarterised it to stem the bleeding.no problems until yesterday when It started bleeding again.

    I have lost eyebrow hair-started about a year ago but I couldn't be sure it was happening then ,now have lost half of my eyebrows.i also have had bruising and swelling around my eyes for well over a year and my DR hasn't acknowledged this.he says I dont have lupus or thyroid probs as bloods were normal and when I said what about my symptoms-he said he only goes by blood test results.have an appt booked for next Friday as think i may have double vision and the bruising around my eyes is a lot worse and just noticed when I looked in the mirror that the areas above my eyes are well swollen and painful.when i saw him last week and said I had a lot of head pain he said it was a tension headache.?i said no it doesn't feel like that.i just hope he will listen to me when I go and get me a referral to ENT (if that's who I need to see)or an eye specialist???and also that I do have a thyroid problem.

  • Hi,

    I'm sorry to hear that you had such a negative experience with your consultant. It may be worth asking your GP for a referral to a lupus specialist as an alternative if you feel you won't get the care you deserve with them. It is your right to see a specialist. If you let me know whereabouts in the country you are, I may be able to make a recommendation.

    If you need information about lupus, please send me a private message or email me at paul@lupusuk.org.uk with your name and address and I can pop a pack in the post for you.

    Best wishes,



  • Oh my!!

    I don't know you or where you live but you must have the same rheumatologist as me. I was there on Thursday last week getting fobbed off !!

    Keep your chin up, you are not alone xx

  • Sorry to hear of your frustrations. It does sound like you need a second opinion. Sounds as if your rheumie isn't up to much. Good luck in the future :)

  • Thank you all so much for taking the time to read my long post. I was feeling really frustrated and being able to get it off my chest really helped!

    Part of the problem on Thursday was the clinic was running really late and it was an evening clinic so it appeared that the rheumy was just trying to get people in and out as soon as possible. I think that's the reason he advised he would start me on medication at my next appointment.

    I plan to see my GP and ask to be be referred to a lupus specialist. If anyone can recommend one in the North West, I am based in the Greater Manchester area, that would be great.

  • Hi. I can highly recommend the lupus clinic at the MRI in Manchester. Dr Bruce is the consultant I see. I feel very safe with the docs and nurses there. They have a LupusUK Centre of Excellenc award I think.

  • Out of interest I am under rheumatology at Salford royal. I am intrigued to hear about Dr Bruce at MRI!

  • Hi, I too had about a year and a half with a rheumatologist that sounded pretty similar....until January 2013 when I thought I can't deal with this pain and bit the bullet with my GP and asked for a referral to another rheumatologist. I now see Dr Griffiths at Freeman Hospital, Newcastle and have never looked back. Immediate diagnosis, rheumy nurse on helpline if needed, good liaison with GP and consultant, regular appointments and finally on the right meds! Don't doubt yourself and ask for another rheumatolgist. If I had left it any longer then more damage would have been done. Trust yourself and good luck. x

  • same with me I only have mild lupus I would look ravaged apparently. hair losss. ulcers, skin problems etc.. but I don't feel great. tired,achy,depressed and now it looks as if I have heart problems.. and my sciatica is literally killing me at night. all the rheumy does is give you hyroxy and if that does not work some chemo meds or steroids. not much to it i'm afraid

  • Thanks Sjink I recalled reading a post on this forum a while ago and the poster mentioned they saw a good doc at the MRI but I couldn't remember who they said they saw. I will definitely be going to my GP and asking for a referral.

    I'm so glad I found this site it is such a great place for information and support. Thank you all who replied with your own stories you have given me the encouragement I needed to stand up for myself and ensure I get the care I deserve.

    Take care x

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