Oxford

[artists]

hi all l have HUVS after being really unwell l am now now on rituximub every six months . It has been a life saver for me . We are thinking about moving to Oxford so l am very uneasy . I probably can still travel for treatment but l have to travel the day before to get there on time . The consultant will not share treatment. I am happy with my present treatment so feeling a little uneasy about having to change . Does any one have experience with the oxford rheumatologist. Thank you

[piglette]

several of the rheumatologists in Oxford have links with the University, so have particular interest in their subject. ouh.nhs.uk/rheumatology/tea...

[artists in reply to piglette]

Thank you very interesting . I realise it’s me feeling uneasy about a change . I understand that some hospitals push steroids instead of rituximub because of cost . I’m sure I’m wrong l think l just needed to be reassured.

[piglette in reply to artists]

I would have thought if you moved to Oxford, the doctors there would carry on where your old doctor left off. You can always ask why they want to change if they did of course. Oxford is a lovely place to live.

[artists in reply to piglette]

Thank you. I’m sure you are right. nerves !!!!

[piglette in reply to artists]

Where are you moving from?

[artists in reply to piglette]

Suffolk

[piglette in reply to artists]

Quite a way. Do you know Oxford or is it all brand new?

[2534]

hi artists.

Well, you have landed on your feet if you go to Oxford. I was recommended to Professor Raashid Luqmani, by none other than Professor David Jane at Addenbrookes. This was for specialising in Vasculitis! Also, when I went to the brilliant Chelsea and Westminster Hospital when I started symptoms years ago, there was a doctor Alex Brand as Head of Rheumatology department, presumably the same Alex Brand as on the website. Plus all these guys will be linked into research at Oxford, which we all know now, as among the best in the world, particularly with the Covid response,

It looks like you couldn’t have chosen, a better place to move to, if you tried!

I wish you all the very best artists,

2534

[marianwoollard in reply to 2534]

I'm under Professor Raashid Luqmani as well couldn't have a better specialist

[artists]

thank you all for your advice . At the moment although l live in suffolk l get treatment at the royal free . I am due to go in a couple of weeks . I will ask their opinion as well .

[artists]

I have just read your bio . I had similar problems being diagnosed . It was told l had a good imagination . One consultant finally sent me to London before discharging me finally (l was told ) Thankfully l got a diagnosis and help . Good luck .

[DevonLottie]

I used to live in Oxford and prof raashid luqmani was my consultant. Now I've moved to Devon and he continues to oversee my care. His knowledge of vasculitis is second to none and is at the leading edge of research. As someone else said, you've truly landed on your fefeet. there

[Hoofprints]

I have UVS - would it be ok to PM you?

[artists in reply to Hoofprints]

Yes that’s ok

[Hoofprints in reply to artists]

👍

[Suzywhizzo]

Hi Artists, I have also seen Professor Luqmani and like others have said, you will be in great hands. I just wondered who you saw at the Royal Free, as I was there for several years and saw Rheumy, Dr Ong and a neurologist, Dr Kidd, however, he has now retired and moved back Ireland and I havnt been given a replacement yet.

I am I/2 an hour away from Oxford and you are lucky to be moving to such a wonderful place. I wish you all the very best.

Suzy

[artists in reply to Suzywhizzo]

Hi l see mr Stratton he’s very good . If l see a register when any problems come up they go to ask his opinion . As you live so near to Oxford does that mean you are a patient in Oxford or the royal free .

[Suzywhizzo in reply to artists]

I was seeing Professor Luqmani, but when covid struck my appointments dropped off, so luckily I had private with my work and I was referred to Dr Youngstein and she has been amazing.

When Dr Kidd retired, my rheumy appointments also dropped off as well at the Royal Free.

Suzy

[Pitville-Man]

I am being treated for EGPA by Prof Luqmani and would be happy to recommend him and his team.

John

[artists in reply to Pitville-Man]

Thank you

[Hidden]

Let me give you a different perspective. I was DX with C-Anca GPA in July of 2017 by a very good nephrologist. He put me on Azathioprine and Prednisone then in 2018, I went through two 4 week sessions of Rituximab. In Sept of 2019, he stopped all drugs related to treatment for the GPA. At some point after that, I told him I had read that Rheumys were prescribing Rituximab every 6 months as maintenance. His comment back to me was, "why would I want to give you a medicine that pretty much kills your immune system and exposes you to the threat of infections when you DON'T need it." It seems that the Rheumatology consortium decided a few years back to make this part of their treatment plan. My neph told me that doctors get kickbacks for using this drug. So I see my neph every 3 months and do a full set of labs each time. On the every 6 month labs, he checks for my Anca titer and this is his way of checking to see if my GPA is flaring. My point here is that once you are in remission, you may not have a flare anytime soon if ever. I was on my death bed in 2017 with total kidney failure and have been in remission since Sept of 2019 and no maintenance drugs. Just something to think about.

[artists in reply to Hidden]

Hi thank you. I am not in remission. Over the years l have got steadily worse , the only relief l get is 6 monthly rituximab. I am lucky I don’t seem to catch infections very easily . I hope you continue as you are , maybe l have that to look forward to .

[Hidden]

I’m curious to know what your doctors are using to determine if you are in remission or not. Did you have Anca positive Vasculitis or something different? What markers are they using.

[artists in reply to Hidden]

I have no idea what the criteria are . I just know that severe pain ,swollen muscles , itchy skin with rash , vomiting and diarrhoea, all indicate that l am really unwell . I count the weeks until my next infusion .