No pulse ?

[withington1961]

Hi , I have been on Pred since August 2015 slowly reducing- now on 6.5 mgs. Started with Atrial fibrillation last Nov and about the same time it has been noticed that I have no detectable pulse in my right arm , wrist or arm band? Has anyone else found this and what does it mean? My left arm is ok to take blood pressure and pulse ???

[Celtic PMRGCAuk volunteer]

Withington, I'm assuming that the medics have ruled out an embolism as being a possible cause?

I'm sure PMRpro won't mind me mentioning that she has AF, and therefore, will be able to offer advice to you on this from her personal experience. I'm sure she will be around soon and reply to your post.

Lovely photo by the way - still smiling in spite of PMR! Hope all goes well for you.

[withington1961 in reply to Celtic]

Thanks Celtic. The medics just look surprised and shake their head ? If they don't know i'm sure I don't ? it has been the same for at least 6 months and I can't take my pulse on that wrist .

[Hidden]

Hi Withington,

the rule out for no pulse is that you have Large vessel disease affecting the subclavian and brachial arteries in your right arm. Have you ever had an CT angiogram, MRA or CT/ PET to look at the vessels?

It's probably happened over a long period of time and you have developed collateral circulation so that the tissues are still getting blood and nutrients. Do you see a Rheumatologist, if not I would ask for a referral ( to one with experience in Large Vessel Vasculitis ) as soon as possible as they need to check your Aorta isn't involved, the large blood vessel that comes from the heart.

I am astounded that the medics seem surprised and shake their heads, although I have heard similar stories from other patients who have had similar. I will try and find a link that explains it all.

[withington1961 in reply to Hidden]

Hi keyes, after I had my visit to A & E with AF for 6 hours , the cardiologist ordered a scan of my heart after which he said my heart looks fine and that it is due to the signal from my natural pacemaker causing the AF . I am now on Flecainide at night and a beta blocker in the morning . This seems to keep it in order for now. No-one seems concerned about my lack of pulse, they just use the other arm?

[Hidden in reply to withington1961]

If the scan was an echocardiogram it won't show up aortic involvement. I know this because my echo is normal and I have a dilated thoracic ascending aorta that it didn't show.

If the absent pulse was due to an embolism it would have presented acutely with sudden onset of symptoms. Just because no one is concerned about the lack of pulse doesn't mean anything, quite frankly it shows a lack of knowledge on their behalf. I help on the Vasculitis UK helpline and your story is not uncommon in patients with Large Vessel Vasculitis. I don't want to frighten you but I would insist on a referral to a Rheumy and on answers for the lack of pulse. I don't know where in the UK you are but the UK Large Vessel Vasculitis expert is Prof Justin Mason at the Hammersmith in London, there are other pockets of excellence up and down the country as well. Happy to help you find someone ( fairly ) local to you.

[withington1961 in reply to Hidden]

Hi It was an echocardiogram. I live in Bolton lancashire. My next appointment with my doctor ( I have never been referred to a rheumy) is 21st of july. I have looked at the site and it says treatment is usually pred any way. Could it go on it's own with the pred I have been taking? I was started on 15 in August last year and it took about five days to work on the pain.I am now down to 6.5 mgs reducing .5 every fortnight. If I go to the doctors what should I say?

[Hidden in reply to withington1961]

They need to see if you have " active " disease that is still causing damage or if it is " burnt out ". The problem is that you can have sub clinical disease with the prednisolone masking the symtoms. Although the treatment is pred it is usually a much higher dose than you have been taking. It's important that they investigate to map exactly what is happening.

I would just say that as you have PMR you are at risk of Large Vessel Vasculitis. You are concerned at the lack of pulse in your right arm and wonder if the large arteries into the arm are affected and your Aorta. You have never been given a satisfactory explanation for this and feel you need a referral for some answers. Ask them to document your request in your notes and their response to you. If they refuse ask them for their clinical rationale for this. I would print off the link I have sent you and take it with you. Do they have evidence that it's not Large Vessel Vasculitis causing your symptoms and that it's not doing more damage?

I will do some research and see if there is anyone experienced near you and PM you the name. You are entitled to a referral to the Consultant of your choice.

[withington1961 in reply to Hidden]

Thank you I will do as you say .I will let you know what she says.

[Hidden in reply to withington1961]

Have sent you a PM.

[PMRpro Ambassador in reply to withington1961]

I've just read the whole conversation with Keyes - which saves me saying more than my immediate thought was subclavian steal syndrome - which can cause lack of pulse on the affected side. That isn't the only thing it could be though - as Keyes says. PMR and LVV are different kettles of fish - just like GCA needs rather more pred than PMR (GCA is a LVV too).

I, too, am slightly flabbergasted at the medics total lack of interest! I would be asking for some other investigations. Insistently.

[Hidden]

This is a good overview. Takayasu's Arteritis is on a continuum with GCA and the features can be similar.

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