Has awareness of Takayasu's by cardiologists improved. I first saw a cardiologist in 2001 but not diagnosed till 2011.

[TakPatient]

I have just discovered this forum and am finding it very interesting and informative. I would like to hear how others have been diagnosed with Takayasu's arteritis? Has awareness of Takayasu's by cardiologists increased over the years or is it just good fortune that I eventually saw a cardiologist who recognised it?

In 2001, at age 54, I started getting angina and within a month I had emergency left main stem bypass surgery followed over the next year by angioplasty and a subclavian/carotid bypass due to subclavian blockage. Well hindsight is a wonderful thing and although I was told that the artery thickening was not due to fatty deposits, more likely some kind of infection, no further investigation was performed. I felt extremely fortunate to still be alive and got on with my life.

Time passed and I still suffered from occasional mild angina which was treated by heart medication. It got a bit worse so I start seeing cardiologists again (now living in a different part of the country). Ultrasound echo cardiogram showed a leaky mitral valve (to match the long standing leaky aortic valve) and eventually I had further investigation with an transoesophageal echo cardiogram. The cardiologist who performed this procedure took one look and immediately suspected Takayasu's and referral to rheumatologist followed. Takayasu's was soon confirmed with a PET scan in 2011.

I take prednisolone and methotrexate although I am still struggling to get the right dosage to control angina. I have no other symptoms apart from lack of energy but that may be due to the medications as much as the disease. I get the impression that further heart surgery will be very much a last option.

I would love to hear other peoples experiences.

[RichardE Volunteer]

Hi,

Unfortunately I think awareness of Takyasu's can be patchy, much like it is for many of the more rare types of vasculitis. With an estimated 0.8 people per million having Tak in the UK it's not surprising that some consultants will maybe only see one or two patients with the disease in their whole career.

However there are centres of expertise in the UK with consultants who specialise in the disease. I attended a large vessel vasculitis masterclass in Manchester at the end of last year where Prof Justin Mason from Imperial College hospital spoke about his experience of Takyasu's. Yet even he had only seen 120 cases since 2000.

But having experts like this publishing papers and sharing their expertise amongst their peers can only be a good thing for awareness of the disease.

If you've not seen it we have an article on Takyasu's written by Prof Mason on our website here :

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

And I'm sure we have other members here on HU who have Tak and will comment about their experiences too.

All the best,

Richard.

[BronteM]

Hello, TakPatient,

My TAK was diagnosed in January 2012, after several years of assorted symptoms, and chest pain that my GP thought was indigestion! I was actually diagnosed after four blue light visits to A and E, when someone finally realised that I had no pulses in either arm and pretty random blood pressure, and that I wasn't having a stroke. My age was probably a factor in the delay as you are not meant to turn up with TAK unless you are under fifty. Ultra sound scans, a CT scan and then PET showed that the arteries in my arms are blocked in several places, the ones in my neck are narrowed, and my aorta is inflamed with about 30% narrowing. After two years of treatment I'm feeling a lot better, but have only had about 20% improvement in my blood flow in the affected places.....so I've probably had some inflammation and scar tissue building up for a long time. I take steroids and have just had my fourth rituximab infusion. Neither methotrexate or cyclophosphamide worked for me. I'm also on amlodipine for my blood pressure, and that helps with the chest pain too. When I saw a cardiologist last year, we agreed that I was taking quite enough pills already, so she didn't add any more! I've also been told that it's very unlikely that I'll get any surgery, as there are just too many blockages in my arms, and my aorta is big enough to cope for the time being.

You obviously came to your diagnosis by a completely different route, which is very interesting. And it does sound that you are amazingly lucky that you are still here. My main symptoms were much more centred in my arms, with cramp, pins and needles, raynauds in my fingers, and pain whenever I used my arms. At one point I couldn't even lift the teapot down ....and I kept dropping things. Many meals have been rescued from the kitchen floor! I also had visual problems and dizziness, but they are much better with treatment. But the fatigue has stayed; it's a lot better than it was, but I still have too many 'bad' days which leave me stranded on the sofa and make me very unreliable where family and friends are concerned.

Do hope that answers a few questions for you - sorry that I've done rather a screed!

[TakPatient in reply to BronteM]

Hi BronteM,

Thank you for sharing your story. I am reassured that there are other drugs out there that might work for me too. I am feeling a lot better on 15mg steroid at the moment. I have had to reduce the methotrexate due to my kidney GFR level. I have a kidney ultrasound and another PET scan scheduled.

[BronteM in reply to TakPatient]

Interesting about your reaction to methotrexate. I had to stop taking it for exactly the same reason as my kidney function was going down fast enough to frighten my GP! Liver was fine though...

[Littledot3]

Hi TAKpatient,

I was really interested to hear about your Takayasu’s artertis and chest pains/angina. It took several years of feeling unwell and symptoms (tiredness, shortness of breath, cough and eventually chest pains etc) before I was finally diagnosed with Takayasu’s in Spring last year. I also had a pulmonary embolism a few years back which it is likely was also caused by the Takayasu’s although I didn’t know it at the time.

Before having a diagnosis and starting treatment I was often getting excruciating chest pains which even woke me up in the night although painkillers would help. I even went to A&E twice with it and got sent away after they had done the usual basic tests and said everything was ok. Within days of starting prednisolone last spring however, the chest pains went. However, I have been trying to taper down the steroids but when I get to around 8.5mg the chest pains return. They are not too bad at 8.5 but I have tried to go down to 7.5 and they were a lot worse again. I am trying to taper more gradually in smaller amounts to see if that helps.

I still have tiredness, shortness of breath and a cough etc and the impression I get from Addenbrookes is that my ongoing problems are likely to be due to lung scarring. I was assessed at Papworth for pulmonary hypertension but they said I didn’t have that. I was very fit before and am relatively youngish now (36) which I think has helped me manage a lot better than I might otherwise have done but I still cant do a lot of the things I did before (no more mountain biking, half marathons or circuits classes!).

I’m having another MRA scan to look at the arteries next week to see what’s going on. I am just wondering about the chest pain and whether there might be a similar problem with me? I see a vasculitis doctor and a respiratory doctor but wondering if I should see a cardiologist? Papworth did and echocardiogram and ECG and said everything looked ok but then I didn’t feel well for several years and kept telling the docs something was wrong and no-one took me seriously and turned out I had a PE and Takayasus so I tend to take what they say with a pinch of salt! I really would like to reduce the steroids further but think it’s going to be difficult with the angina pains.

[Littledot3]

I forgot to say that last time I went down to 7.5, like BronteM, my symptoms of pins and needles and numbness in the arms also returned particularly at night. I also suffer with cold hands but this is not as bad at the moment as it has been in the past. I am also on methotrexate and infliximab. I also have bad and not so bad days with the tiredness / fatigue and shortness of breath - I don't do as much as I did before and will have some days where I just have to rest or havent got it in me to do what I want - but otherwise I try to carry on as normal

[TakPatient in reply to Littledot3]

Hi Littledot3

Thanks so much for sharing your story. Best of luck with your MR scan. Hopefully that should show what is going on. In my case because I came via the cardiologist route I have had a barage of non invasive scans over the last couple of years.

I also try to keep as active as the angina allows. Aerobic exercise at the gym twice a week and swimming.

[lisaains]

hi I was told I had it last year , I am 32 I first went to the docs with all my body twitching the same as you get in your eye lids but this was all over my body they said I had isaacs then a couple of months later the chest pain and neck pain started , I also went a and e 3 times where I was told it was prob something pulled ,I refused to give in and demanded to see some one else so I went to the Walton hospital in livepool , the nuro said I will prob have lung cancer as people with isaacs tend to get this but it is easy treated , how ever when they put me through ct scan they found t. a . . I am struggling to get less then 20mg as every time I do it comes back worse then last time , so my consultant has now sent me to see professor mason in London so a 4 hr trip for me ,

[TakPatient in reply to lisaains]

Hello lisaains

Everyone has such a different story to tell. At least we have all got a diagnosis eventually.

I have just been reading some of Prof Mason's research papers. So far I am happy with the consultants I am seeing but if I feel I need further help I will be seeking him out since he seems to have such experience of the disease and surgical intervention.

I suppose it is inevitable that with such a rare condition some of us are having to travel long distances. I have to allow 2 hours to get to my consultant and they are always running 1 or 2 hours behind apt time!

Hope it goes well in London.

[cleojack]

hi i not great at writing but here goes,a year ago today i was rushed into hospital with chest and neck pains turns out i was having a heart attack which at 43 is very scary,i was kept in hospital for 5 weeks as they kept finding more and more wrong blockages in my arms and legs also my neck no pulses and my blood pressures were going mad,its a year on and im still as bad my tak is in remission but im waiting for open heart surgery but as im still taking steroids and they say my arteries are like butter they will not touch me also have sugar diabetes and my thyroid does not function.i put on 4 stone in a year,my hair came out and currently have lost 4 front teeth.i was given only a 20 per cent chance of surving surgery so now i just have to wait.i can no longer walk as i get back and chest pains.im so swollen due to my predisolne especially my buffalo hump.but wait i will im under blackpool and st annes hospital i have 6 specialists one day ill be back to normal just not sure whenxxxx