What to do now ?

Hi all

I have had lupus symptoms for 3.5 years skin biopsy taken lichen planus. I have extreme joint pain hair loss skin rashes dry mouth livedo light sensitive butterfly rash fatigue and seen reuhmatologist 14 th sept who said no as ANA negative ? Took myself to a&e 3rd oct now have dvt.

I have now been sacked from my job after 4 years due to time off sick they said capability reasons. Pip declined so dont know what im going to do now.

Very frustrated with the whole thing.

Thanks for reading

6 Replies

  • Hi Paula

    It took four blood tests, over a 3 year period to get my SLE diagnosis. It's one of those conditions that can unfortunately take an age to be confirmed. How many blood tests have you had so far? I would insist your GP request further tests and also keep a visual record of the facial rash as well as a diary of symptoms, GP, hospital visits etc. Anything related to your health. Brain fog tends to loose our memories when we need them the most.

    It was my GP who pushed the Rhuem Consultant to consider SLE, who finally conceded Fibro and Lupus.

    So many health professionals have 'The House Factor'; dismissing the potential of Lupus.

    Once you've got a more accurate idea of what's going on the application of benefits does become easier.

    Be persistent, know at times all you want to do is sleep and forget but please don't think you're on your own. Your not going mad, honest.

    Take care and keep in touch.


  • Hi Autumnsun

    Thank you for replying

    I have my work pass with photo on from 4 years ago with butterfly rash. My gp said lupus then but as biopsy on my head and back said lichen planus which is also an immune disorder i only ever seen dermatologist. This was my first reuhmy appointment and i told him i had negative ana sometime ago and his came back negative also but i did mention that it is possible to be negative but still have lupus and he said no very very unlikely so i go back to see him 16th nov to see what he says i do have ? Worried about loosing my home also now i have been sacked for being ill which the stress makes it all that much worse.


  • Dear Paula

    I am so very sorry for the horrible time you are having just now. I hope to be of some practical help, as well as emotionally supportive.

    First of all regarding your dismissal from your work, if you had a contract, then your employer would have had to follow certain procedures, as far as I am aware, they simply cannot sack you for illness. Link to your rights below, if you feel procedure has not been followed, please contact CAB as soon as possible.


    Regards your PIP application being failed, again please contact CAB and appeal this decision, if you have only recently failed, appealing needs to be done within 4 weeks from notification of failure.

    There are some excellent guides via Lupus UK on benefits, consider joining up and availing yourself of the guides.


    I know this all seems very overwhelming for you just now, but your priority has to be to keep the roof over your head, and the CAB will most definitely help you do this, it is daunting I know having to fight for things when we feel truly shocking, but unfortunately it has to be this way.

    Prior to going back to your Nov appt with your consultant, I would contact his/her secretary and ask if you can have an interim telephone consult with him/her, and explain to the consultant what has happened, and ask if they would be willing to write a clear and bulleted summary of your medical problems and how they affect you, to support your PIP claim, are you aware you are also entitled to ESA Employment and Support Allowance, you can claim both, they are entirely different benefits. Again the CAB or if you have one in your area DIAL will assist you. Also make an appt with your GP and get his support both medically and practically via letters of support, your GP will be especially crucial if your employers have unlawfully dismissed you.

    Good luck Paula.

    Best wishes


  • Hi LupusKaren

    I am appealing against my dismissal as oh reports over the years asked for dss assessments on lighting fan desk and chair which was never done. I have been treated unfairly since i became ill but in may the pain and stiffness became unbearable on methotrexate vit d naproxan neurontin dyhydracodine paracetamol and still in pain now. On warfarin now so had to drop naproxen. I have appealed against pip posted the letter yesterday but its my mortgage i worry about. I am so tired i havnt got energy to fight them all x

  • Hi paula1969,

    I'm sorry to hear that you are experiencing so much stress at the moment.

    With regards to your diagnosis, I see in a comment that you have another appointment with this rheumatologist. You'll need to push for answers so that they can find a diagnosis that explains your symptoms. If you are not happy with this consultant, you are entitled to a second opinion. You could ask your GP to refer you to another consultant, perhaps a lupus specialist?

    Are you going to appeal the PIP decision?

  • Hi paul

    I had 1st pip assessment this feb then gave them a medication change which i now know should of been health change only so was called for another assessment may where i lost pip when i gave meds details only i was not asked any health questions ? I did the reconsiderstion and failed so tribuneral now.

    I am also appealing at work for dismissal.

    I knew he would say no to lupus due to negative ana and i seen my gp tues 13th and asked him for 2nd opinion dr bruce manchester and he just said see what happens next appointment.

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