Pulse

[kate48]

Ive no pulse in my right wrist, does anyone else have that symptom? if so what causes it,?

ive got systemic vasculitis,

[PatriciaAnn]

Hi Kate

Have your doctors not given your vasculitis an actual name? There is a vasculitis called "Takayasu Arteritis" it is also known as "Pulseless Disease". You can read about this on the Vasculitis UK website:

vasculitis.org.uk/about-vas...

[kate48 in reply to PatriciaAnn]

No they just say ive got systemic vasculitis, will look it up, thanks

[JElsom]

Hi Kate. I have Takayasu's arteritis and have no pulse in my left wrist. This has been caused by inflammation (and now possible permanent damage) to my left sub clavian artery. What other symptoms do you have? Jane

[kate48 in reply to JElsom]

Hi Jane , it started out in september, when i got what i thought was raynauds, my fingers go white then blue, except they stayed blue, went to Drs who messed about with this for over 2 months, went to see another GP who put me in touch with a rheumatologist, went to see him in Dec, the symptoms at this stage Tired, weight loss, no appetite, very painful cold fingers, missing pulse, a vein in wrist went bumpy,Ulcers on 4 fingertips, he admitted me for a iloprost infusion to open up my capillaries etc, when i got home for about 4 days my feet and legs feel weird and weak, but it went,

he put me on cyclo....and steroid IV,. since i had this treatment 7th Jan my feet

[John_Mills Volunteer]

vasculitis.org.uk/about-vas...

this is on the VUK website discussing Takayasu if this helps at all... Kate.. and Jane

also there is a facebook group for TAK ......it sounds as if you are receiving the correct treatment...but should you need any more support there is an excellent Doctor at Hammersmith Hospital in London who specialises in patients with Takayasu.. if you would like his name.. we can also put you in touch with other people who have TAK too if this will help...

take care

Susan

[kate48 in reply to John_Mills]

Thanks Susan,

[BronteM]

This time last year I was in hospital with no pulse in either arm. There were four portable blood pressure machines lined up by my bed as they tried to find one that could measure my BP! Eventually they worked out a way using a Doppler machine, but no one knew if it was accurate or not. In the months before I'd had numerous symptoms, including Raynauds, 'dead' arms, pins and needles and pain in my arm muscles whenever I did anything - even something simple like getting a teapot out of a cupboard. An ultra sound scan showed 99% blocking in the artery in my left arm, and 95% in my right. I was diagnosed with Takayas's, though that has since been disputed as i am over fifty. Treatment with the usual steroids etc restored a pulse that could be found, and measured. But I am now just on steroids as I wait for my first rituximab infusion, and my pulses have gone again!

[kate48 in reply to BronteM]

I dont know what type ive got yet.ive had ultrasound i think it was ok, might find out more tomorrow kate

[BronteM]

Good luck....there is no doubt that you need to become your own expert. It will help you to become more positive. And if you need a second opinion, I found the Hammersmith Hospital really supportive and ready to answer all my questions.

[kate48 in reply to BronteM]

Im up in Sheffield though

[BronteM]

I'm in the East Midlands, but I only needed to go once. I went down by train ... Exhausting but worth it.

[kate48 in reply to BronteM]

Its worth looking at..thanks

[John_Mills Volunteer in reply to BronteM]

Do you see Justin Mason BronteM?

Susan

[kate48 in reply to John_Mills]

The Dr i saw at the hospital yesterday i think she was a junior

No not seen him

[BronteM]

Yes. I saw his registrar first, who took my history and was very thorough. She was also happy to answer lots of questions. Then professor Mason came in, and we went through the notes, discussed diagnosis and treatment etc. He told us that he is happy to be the third layer, working with local specialists, and giving an a occasional check up if needed.

[RosieK]

My left radial pulse is absent. I have Takayasus disease AKA Pulseless disease. I go to Clinic for Rare Diseases at Guys Hospital London