dermatology recommendation: I have recently been... - LUPUS UK

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dermatology recommendation

missingtravel profile image
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I have recently been assessed by Professor Chinoy in Manchester - he is a renowned expert in Myositis. He didn't feel that I had an autoimmune condition but probably had experienced immune reactions to the Covid 19 vaccination in 2021 (Moderna booster) and a drug prescribed for me in 2019. He did think that I might be developing Cutaneous Lupus and my ANA could be negative - so I might wish to contact a specialist dermatologist. My ANA and ENA panel were indeed negative. My bloods have always been fine, apart for a very mildly raised CK and low bilirubin.

I have ongoing symptoms of episodic fatigue/nausea/ chronic severe abdominal pain/muscle and joint pain /transient butterfly rash (sparing labionasal folds) /other rashes and sun sensitivity. I would really appreciate advice about a dermatologist that I could see privately.

I live in Scotland and mostly retired, and don't mind travelling - as we have no Lupus Centre of Excellence here and I have been ill for 4 years. It appears easy to refer myself to Rheumatology at the London Lupus Centre for instance, but would prefer to see a dermatologist at this stage.

My thanks to you all.

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Turquoise-1 profile image
Turquoise-1

Hi missingtravel,

You can self refer to a Nuffield Private Hospital (or any other I guess?)., even if you do not have private medical insurance.

There is a list of doctors, often with their photograph and a description of their specialty, training, working practice and their main area of expertise.

You do not necessarily need a letter from your GP but it may be preferable.

After waiting 9 months for a NHS Dermatology referral, seeing my GP midway through who expedited the request, I eventually received an NHS appointment for it to be cancelled as the date neared.

I asked my GP about a private referral & was told they could not recommend anyone specifically - it was up to me to choose one for myself. GP did do me a referral letter though.

I simply read through all the Dermatologist’s bios at my local Nuffield Hospital, selected the one I felt was most appropriate for my symptoms, rang & booked. I got an appointment very quickly - £200 for 20 minutes.

However, another NHS appointment arrived for 6 weeks after the private one, so I cancelled the private one as it is such a lot of money especially if I have to pay for further tests on top of the consultation. I just hope the NHS appointment for 2 weeks time doesn’t get cancelled! I have kept the private referral letter just in case.

I realise I haven’t given you an actual Dermatologist’s recommendation but I just wanted to share my experience with you.

I have SLE Lupus but have several skin & scalp problems which have not responded to any meds prescribed by Rheumatologists.

All the best to you …..

missingtravel profile image
missingtravel in reply to Turquoise-1

Dear Turquoise,

thank you for your detailed and helpful reply. I will look at the Nuffield list. I am so very sorry to hear how long you have had to wait - though not surprised. I hope that your appointment goes well and that you see an improvement in your symptoms before too long. Take good care.

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