takayasu's arteritis

[mayony]

Hi there,

Have any of you that has takayasu's arteritis had a angioplasty for the carotid artery failed. If so what did they do afterwards. I had mine, and it was about a hour into it, about to inflate the balloon and my arm started to go numb and my dysphasia started to come back, so they stopped the operation. I go back next week to see the consultant.

[BronteM]

Sorry, but I can't be very helpful as I've not had this procedure. But I am interested as stents in my sub-clavian arteries were suggested at the last clinic I went to. My husband has a very successful stent in a coronary artery, so I thought it sounded like a good idea, but perhaps I should be more cautious? It must have been very frightening for you and I hope your consultant is reassuring when you see him/her.

[mayony in reply to BronteM]

I would go ahead with it, as you are awake you get to know what's going on. Just be very aware of your body's reactions. My consultant is amazing, and I've got every faith in him, it's just the takayasu's - I never know which way it is going to throw me next.xxx

[BronteM]

You are absolutely right about the Takayasu's- never seems to follow the rules at all!

[mayony]

Hi there,

Well the consultant said that I have got to in for a risky op. The carotid artery is 90 % narrowed. I might not have a stroke at the operation but there is a chance of it happening. It just depends on how my body reacts. The op is the only way forward, if I did nothing then I would have a stroke eventually anyway. X

[BronteM]

That's not a good scenario either way! I'm so sorry that you are in that place. When were you diagnosed and what treatments have you had? My consultant only suggested stents for after my immunotherapy was completed and I was in proper remission. Takayasu's does come with a warning of strokes; I was warned about them from the moment I was definitely diagnosed. But the either/or sounds a bit heavy.

[mayony in reply to BronteM]

I found out I had takayasu's in April 2011 then I had a stroke 6 weeks later. I had my double bypass 4 weeks after that. I lost my speech and my right side, but I got them back eventually. They put me on prednisone, methotrexate, clopidogral, and blood pressure tablets. The prednisone was reduced slowly and by Jan 2014 I was off it completely. Then by March the takayasu's had come back. I got put on prednisone, taken off the methotrexate and put on cyclophosphamide infusions. I don't think the cyclo did me any good as the takayasu's continued in my carotid going from 60% occluded back in September to 90% now. I think you have to know your body and just fight tooth and nail to battle this disease. I found out the takayasu's had come back last year because of the bruit in my neck, otherwise I wouldn't have known. Good luck to you Brontem xxx

[BronteM]

You are a few months ahead of me...I was diagnosed in January 2012. I was put onto 60mg of prednisone, then methotrexate as the steroid dose reduced. But I've always been allergy prone, and methotrexate joined the long list of things I can't take. Cyclophosphamide worked, but brought me out in a massive head to toe rash, so I'm now on rituximab but that won't go on much longer. I'm meant to have stopped the prednisone too, but struggling to get below 4mg.

I'm interested that the Takayasu's is back as I seem to remember being told that it had the lowest mortality rate, but the highest

[BronteM]

(Continued!) relapse. My next rituximab is in three weeks, but I'm sure my carotids are filling up again as I keep getting dizzy, just as I was when first diagnose. Will join you on n the tooth and nail fight!