Can anyone recommend a private scleroderma specialist in South West pls?

[Horseymum]

Hi all. I recently developed raynaulds disease which I knew at age 48 was not the ‘normal’ presentation of this issue. On too of that I suddenly experienced severe, overwhelming exhaustion. I went to GP who ran autoimmunity tests and i have a strong positive result with a centromere pattern. The GP didn’t go into it all that much (I have pretty awful anxiety so he probably didn’t want to panic me). However, having googled it it would seem scleroderma of some type is likely as from what I’ve read healthy people dont throw up these types of centromere antibodies. I’ve been referred to rheumatology but its a five month wait and Im panicking 🙁

Im willing to go private but the question is who is an expert and also sees patients in my area. For reference I am North wilts. I saw a lot about a Dr Pauling but it doesn’t look like he sees private patients?

thanks in advance

[Horseymum]

Also to add I’ve been slightly breathless for a while which I previously put down to weight gain following a previous injury but am now questioning that, also I have areas of pickling itchy skin (face scalp most noticeable but also hands).

[Jaq1971]

Hey firstly I understand how frightening it can be but as many on here told me don’t google it as it will send you loopy the thing with this is condition it has has varying symptoms although some are similar your presentations will be unique to you , and the waits are long. The best place to go privately is the Royal Free London professor Denton he is the leading person in this field and does offer private consults. The good news is that once you start treatments it will help with your symptoms and life will not feel as bleak and scary I have received really good support on here and it’s worth looking through the posts lots of great advice out there your not alone please know that xx

[Buttsy]

hi,

I was the same with the initial referral, I understand why you may want to go private ,it is all very daunting.I am still thinking about it due to new symptoms and Rheumatologist abit vague.

There is I believe a specialist centre at Salford Royal hospital,I got my nail fold tests done there,but haven’t been referred there myself ,I am under a Rheumatologist at Stepping Hill in Stockport, unsure if he is a scleroderma specialist or not.

I haven’t heard of Dr Pauling.who is he ?

Hope it goes well for you.

Take care

[Sosie]

Royal National Hospital for Rheumatic Diseases in Bath. I hope that is where you have been referred. Victoria Flower took over from John Pauling when he moved to Bristol. She is amazing. I would hold out for NHS referral with her if you can as private will likely just refer you back to NHS for all the very specialist tests you will need that won’t be available privately.

The good news is that centromere tends to suggest limited cutaneous systemic sclerosis which tends to develop and progress slowly. In the meantime, see if your GP will prescribe some medication for the Raynauds to help manage it until you can see the consultant.

I have been diagnosed 12 years and have been looked after at Bath all that time. They really know their stuff and I am a single Mum, still work full time and have almost finished my law degree with the OU. Diagnosis is not a death sentence and you can lead a relatively normal life if you get the right care.

Big hugs as I know it is all very scary and daunting. Xx

[KathleenMary in reply to Sosie]

How does one go about getting a referral to Bath, without offending my current Consultant??

I suffer from severe raynauds and limited cutaneous scleroderma but I am concerned to be reassured that the myriad of drugs I am on are necessary/ effective.

I recently had a broken hip and am now on alandronic acid as well

[Poshcards]

I can highly recommend Bath RNHRD too, I am under a wonderful ladies called Dr Ellie, for my Lupus and I have reynauds too xx

[Sashmo_L]

I received my diagnosis privately in London. I was then referred back to Bath Rheumatology and saw Dr Victoria Flowers within a month. I have had a host of tests with more to come and will see her again once all the results are in. My first appointment with a private rheumatologist was Nov 2022. Diagnosed Jan 2023 and saw Dr Flowers March 2023. I’m now under her care.

[Butterfly197]

Hi, I see Dr John Pauling in North Bristol nhs. He's an expert, kind and compassionate and a good listener. It took me ages to get a diagnosis and it's a long journey from West Somerset to see him, but it's worth it. I started off seeing someone privately but ended up back in the nhs once the diagnosis was made. I have Raynauds and limited cutaneous systemic schlerosis. The raynauds is bad in the winter but everything is better during the summer. Strangely I found using a mobile made it all worse.