Imperial College Help please

[Daisyboodle]

Hi, further to my last post - thank you all so much - my GP and Renal Consultant are in agreement that I see a rheumatologist as well as continuing to see my renal Consultant. A few people and Vasculitis UK recommended Imperial College as I believe they have a Vasculitis Centre there? I think I've had this many years, undiagnosed, so I really want to talk to someone who knows about IGA Vasculitis, or at least is a rheumatologist specialising in Vasculitis. There's a name of a Consultant I've been given but when I look him up on the Imperial website he is a lecturer/renal Consultant not a rheumatologist. Does anyone havea rheumatologist there they could recommend please that I could ask my GP to refer me to? Any recommendations are welcome please as I'm keen to get a comprehensive diagnosis/prognosis rather than just the kidney aspect.

[Main1234]

best to give helpline a ring and they can support and signpost you.

Good luck

[Daisyboodle in reply to Main1234]

Will do, thank you.

[2534]

Professor Luqmani at Oxford not sure which of the Oxford Hospitals possibly John Radcliffe or Nuffield. There is a dr Alex Brand agin as Oxford but if he is the one who I started with at Chelsea & Westminster you couldn’t have a better person

[Daisyboodle]

Brilliant, thank you for you reply. I will investigate!

[ElaineRH]

hi - I will be seeing Prof Siddiqui who was my old respiratory consultant before he took this role at imperial. He is in regular contact with the rest of my team in Leicester. My rheumatologist is brilliant- her name is Dr shaffu. I do know that at imperial they have a MDT who all liaise with each other so seeing any of the team would open doors and dialogue with the MDT..

[Daisyboodle in reply to ElaineRH]

Ahh, that makes sense now, thank you!

[Grannybean]

Imperial's Vasculitis clinic runs under Renal Outpatients, my letters are generally signed "Consultant Nephrologist" and I think most of their patients have renal involvement. Imperial does also have rheumatologists (their research centre has people from both Nephrology and Rheumatology) but I don't know whether they operate as part of the same clinic (Tuesday morning) or a different one. VUK Helpline may have a better idea.

[Daisyboodle]

That's brilliant, thank you. Really appreciate everyone replying so I can understand how it works! I'll definitely call them tomorrow I think to get a foot in the door there!

[Frosty_nights89]

Daisy I have seen a Dr Miriam Chan at the Luton and Dunstable hospital and she is fantastic at sorting treatment out quickly

[Daisyboodle]

Brilliant, thank you. I figure if I'm travelling up to Imperial I may as well investigate everywhere around there. Will put it on the list to call tomorrow. Thank you all for your replies - it is so helpful. As I said, I feel that it's only the kidney aspect that has been investigated and I have other concerns - joints, stomach particularly that I've not spoken to anyone with, despite being hospitalised twice recently. I just want the whole picture really!

[gooseflight]

I think its true to say that whether your symptoms are renal, respiratory or musculo-skeletal, the treatment won't vary, e.g., rituximab plus corticosteroids. If your renal specialist is experienced in vasculitis treatment then he or she will be well aware that other organ systems are often involved. I wouldn't worry too much about getting additional opinions from other specialists. That said, a good reason for consulting a rheumy would be referral to, say, physiotherapy for rehab and more attention paid to mobility issues than one might get from a renal specialist.

[Daisyboodle in reply to gooseflight]

Good point. Thank you for your reply. I'm experiencing joint problems as well as other symptoms that I would like to talk to someone about.

[gooseflight in reply to Daisyboodle]

I had serious joint issues after my initial attack of GPA (and kidney involvement). I was seen by renal and rheumatology. Most of my subsequent contact has been with renal. RTX, prednisolone, physio [and bloody-mindedness :)] resolved most of my issues.

[Daisyboodle]

I think absolute determination and bloody-mindedness is definitely required!