Anyone with TAK have experience of constant pain?

[JElsom]

I have takayasu's Arteritis and have a near occlusion of my left subclavian meaning I have no pulse in my left arm. Until recently I could get a low blood pressure in that arm but now I don't seem to be able to get anything. My left arm definitely aches if I use it when i do things like carry shopping or make a bed. At the moment however I am experiencing pain all the time from my shoulder down into my hand. Does anyone else have this? Do you think it's TAK related? Many thanks. Jane

[PMRpro]

If you have an occlusion that is getting narrower then it will reduce the blood flow to that arm - the pain you get when using it is called claudication and if that progresses and the blood supply gets less it can turn into something called "resting pain" meaning it is there all the time and not just when using the muscles. Is your hand cold or discoloured?

Have you never been referred for an opinion from a vascular specialist on the occlusion or has it not been bad enough before? That's VASCULAR specialist, not VASCULITIS, by the way - different things.

[Suzym2u Moderator Vasculitis UK]

Have you spoken to your consultant about this Jane? Do they have a lot of experience treating Takaysu Arteritis? I only ask because TAK is so very rare and very difficult to treat. About 18 months ago I attended a large vessel work shop discussing GCA and TAK. We were told, at that time there were only 320 recorded cases in the UK.

best wishes

Susan

[BronteM]

Hi Jane,

Spent yesterday having a rituximab infusion at Addenbrookes, so now on the sofa with a bright red face! But I did notice that my arms were deteriorating worse than usual for about four/five weeks before the infusion. Not to the point of continuous pain, but needing to rest them a lot more. My pulse was getting weaker too, but still giving a BP. At the clinic I was told that TAK/large vessel Vasculitis is hard to treat long term, and that they have to be very careful about drugs as the effects seem to change. Perhaps this is what is happening to you? I was also told that they could consider a stent in my subclavian but I will need to be more stable first. It sounds as though you should ring the clinic and have a chat. Another thing I was told yesterday...we'll make you a six month appointment but we need to know any changes in between if you are worried.

And why is making the bed such a problem? Changing pillowcases is one of my least favourite chores!

[JElsom in reply to BronteM]

Hope the rituximab is helping as well as giving you a red face! That was one of the potential options for me as well. I'm very impressed with your 6 months between appointments. I seem to be there all the time at the moment. Hanging washing is another one of my bugbears and washing up. Just household chores really!

[BronteM in reply to JElsom]

Can't hang washing at all - I've ended up with a laundry rack and the banisters!

The rituximab has actually been great and gives me a good five months out of every six. And going onto a six month appointment schedule did feel like a sort of victory.

[JElsom]

Thanks for your replies. I'm lucky enough to live 15 minutes from Addenbrookes so normally see Dr Jayne or Dr Willcocks. They have talked about surgery in the past but like you, BronteM, I need to be more stable or for it to be more of a problem before they'd seriously consider it. At the moment everyone's main concern is some cardiac issues that the TAK has caused which is obviously more worrying but this arm problem is definitely currently more painful/annoying. I've just started on tocilizumab injections so I'm hoping they may make a difference. I'm due back in clinic in a few week's time so I'll definitely raise it again.

Part of the problem (one I'm sure people on here can relate to) is that I never know what's TAK related and what's not. I tend to assume everything is related although this could be muscular or something else entirely! I don't want to go round just blaming the TAK if I'd be better off going to a physio!

[BronteM in reply to JElsom]

Interested in the heart issues too. I seem to have acquired a great cardiologist, but her main concern is my irregular heart beat and she doesn't seem to think that it's related to the TAK.