Giant Cell/Takayasu Arteritis: Hi all, I've... - Vasculitis UK

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Giant Cell/Takayasu Arteritis

Chezh profile image
8 Replies

Hi all,

I've posted on this forum before my diagnosis, my test results have confirmed the diagnosis of the above in my aorta that was removed during my heart surgery. I've been seeing a consultant at The Hammersmith in London already but I'm going to be referred to Prof. Mason (also at The Hammersmith) as he is the specialist in TAK.

I would be interested to hear from other who have been diagnosed with GCA/TAK. Does anybody attend his clinic?

Cheryl.

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Chezh profile image
Chezh
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PMRpro profile image
PMRpro

I've sent you a private message.

Suzym2u profile image
Suzym2uModeratorVasculitis UK

Prof Mason sees many patients diagnosed with TAK and GCA Chezh, in the Autumn of 2013 there were 320 recorded case of TAK here in the UK , in the past 10 years Prof Mason has treated and managed 180 cases of TAK in the UK. I have heard Prof Mason speak on 6 occasions and I believe he is probably the best in the world not only in the UK. Prof Mason also very kindly wrote the page for TAK on the VUK website vasculitis.org.uk/about-vas...

Hope this helps

all the best Susan .....please let us know how things go for you

BronteM profile image
BronteM

After I was diagnosed with large vessel Vasculitis I asked to be referred to Prof Mason for a second opinion. He, and his registrar, were very thorough and reassuring and I felt safe in their hands, and happy to follow their advice and treatment plan. The only problem was that the hospital was difficult for me to get to, so now I'm treated at Addenbrookes which is much easier. Though I have seen Prof Ken Smith at Addenbrookes as he seems to be a link between the two clinics. Good luck, I hope that they get you stable and feeling better.

lisaains profile image
lisaains

Hi prof mason and his team are amazing, I have takayasu and I live in the north of England so travel down 5 hrs and it is worth it. He is so dedicated to helping,

orsen-trapp profile image
orsen-trapp

I have TAK but live in Scotland so seen there. Fortunately mine was picked up at an early stage thanks to the fevers. Got an MRI soon to see if all's OK.

joglo profile image
joglo

Hi I see Prof Mason at Hammersmith he diagnosed my TAK last April. I travel from Derbyshire and find him an excellent Dr. Well worth the trip.

nanbyou.or.jp/entry/141

The above link was set up by the Japanese government on this condition

Some reference books on takayasu "pulseless" disease: igaku-shoin.co.jp/journalPr.... As you know, Takayasu was described by Japanese MD and named after this doc. (From Wiki: in 1908 by Japanese ophthalmologist Mikito Takayasu)

Pauline69 profile image
Pauline69

My husband was diagnosed with GCA last December 2015. Began on 30mg prednisilone and fifty mg azathioprine. He now down to 7.5mg steroids but increased

Azathioprine on docs advice to 75mg but he began nosebleeds so will reduce this to 50mg again. Do not know what TAK is - perhaps you can inform me? I ask questions as hubby cannot work computers. Thanks

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