I am due to have an MRI Aorta for suspected Takayasu Arteritis. On the referral form, it says ‘with contrast’, however, I really want to avoid contrast and would like this done without. I have asked a few places and some radiologists have said I do need the contrast while others are saying I may not need it.
Have any of you been diagnosed without contrast? I am worried to go ahead without and then find that it provides no info at all. But I am very keen to do so, so as to avoid the contrast. If it provides less info I am ok with this, as long as it does provide sufficient information to be diagnosed.
If anyone has been diagnosed without contrast or know that it can be, I would be most grateful if you could tell me.
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miacloud
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You aren’t going to see the inside of the blood vessels without it.
The contrast is safe as is the MRI. It’s the safest option in terms of imaging (other than ultrasound but that can’t look at all your arteries).
I have Takayasu and I’ve had a few MRI’s. it doesn’t take too long. They do most of the imaging before contrast and then the contrast is injected towards the end.
Hi, thanks for your reply. I want to avoid the contrast as I am worried of potential side effects from this, I’ve read really bad things about gadolinium. Particularly as I’ve been so unwell recently, it makes me more worried of reacting to it.
I understand the imaging might be sub-optimal but as long as this is sufficient to be diagnosed I’m ok with that. What worries me is that it wouldn’t provide the required info.
Have all your MRIs been with contrast or do you sometimes have it without? Were you very unwell when having your MRIs? Is this how you were diagnosed?
Thanks for your reply again. So do you think the info provided without contrast wouldn’t be enough for a diagnosis?
I’m so sorry you went so long being misdiagnosed! That is terrible. I’ve been misdiagnosed for 10 years now, so I am so desperate for a diagnosis and I feel this contrast thing is such a hurdle for me.
I’m just worried to have a bad reaction to it. I have read you are much more likely to react when you have cardiovascular issues which worries me.
I honestly don’t think they’d see anything without contrast
I was in heart failure when diagnosed and as I said had no issues with contrast. I also had a cardiac mri done to find out what was going on with the heart too (which used contrast but was done the same time as the artery mri).
Although there is a chance you might have a reaction, the likelihood is slim. And if you did, there’s medical staff on hand to help.
It’s worth trying to let the anxiety go for the purpose of the MRI, but I know it’s not easy. They take lots of images before using contrast because they need to identify the blood vessels so they can work out how big they are and then contrast is added at the end so they can see where the blood flow is which helps identify where narrowing might be.
Thanks so much that’s really helpful. It’s made me think maybe I should just go with it with contrast..
Can I just ask, was your MRI of the aorta only or did it include the aortic branches or other vessels? Also, you say you had heart failure, did this completely impact your cardiovascular ability, like exercising or exertion?
I definitely think you should have contrast just so you know if it is this disease and if so, what damage there is.
They did aorta whole - so from my carotid arteries down to my abdomen. They have done a brain one too as I wanted reassurances about that.
They found I had narrowing in both carotid, the aorta arch, the left arm my abdominal aorta, my renal artery and my pulmonary artery.
With the heart failure I struggled a lot more with walking but it’s recovered to normal limits now. I had help from a physio for nearly a year to get my fitness back and to help me understand what I can and can’t do safely.
Thanks, I think so too, though I’m not sure why some radiologists seem to think they are able to do it without contrast?
It seems like they scanned your other arteries too then, not only aorta? You must have been so relieved to finally know what you have. It’s terrible not having a diagnosis.
I understand about the walking, I have reached a point where going up stairs is a hurdle for me. I’m so glad for you that you’ve recovered to normal limits now, it must feel amazing..
It’s classed as “aorta whole” scan and it comes up because they are the branches of the aorta.
Yes it definitely helps that I’m not breathless just walking a few meters. There was a point where I’d have to sit down half way up the stairs. I’m not where I was before I was ill, and probsbly won’t be. But I’m at a new normal now.
Yes, that’s what I thought too. Cause my consultant was quite clear that he thought contrast was needed.
Oh that’s interesting, cause on my referral it says ‘MRI Aorta’ and when I asked my consultant about this, he seemed to think only 1 cm of the branches would show up as part of it.
Sorry to ask so many questions, but could you just tell me if you had your MRI in a specialist hospital where they know about TA or not?
Yeah, I understand, it shows that at least some of the illness is ‘reversible’..
Hi fellow TAK sufferer. It's lovely to meet you. I wonder whether we could compare notes? It would be nice to be able to discuss this rare disease that few folk know anything about.
I was diagnosed in August this year. I've been on 50mg Pred / day since then and have just started on Tocilizumab. Still having trouble with my arms, which struggle to carry out easy tasks. Having a shower in the morning is excruciating.
Hi MrsChips, I’m sorry that you are struggling.. Hopefully the medication you are on will soon start to have more of a positive impact and make things a bit easier?
I personally haven’t been diagnosed as of yet, I am still only suspected of having large vessel vasculitis. Like you, I really have a hard time with easy tasks. Just tidying, making my bed.. all of those are hard. Can I ask how you were diagnosed? When you exert yourself, is the pain restricted to your arms or elsewhere too?
I was diagnosed after having a stroke in March this year and a heart attack in August, when I was previously very fit. The doctors did suspect it in March but, until the PET CT scan in August, no one did anything to confirm their suspicions.
I just wish I had had an earlier diagnosis as, perhaps, I could have got started on steroids. As it is, I am now on a very high dose of 50mg/day.
The worst discomfort I have is when I am showering in the morning, then getting dressed . Also when cooking and doing kitchen chores, which involve my arms. I also feel very wobbly most of the time. I am very clumsy as my fine motor skills are quite poor.
Apologies if this is stupid but what is the difference between a PET scan and an MRI with contrast?
I was diagnosed with Tak by PET scan and thought this was the only reliable way of doing it. I’ve also had an MRA which appears to have more more detailed info of the aorta. Very confused now.
Hi PaddyPop, I don’t know much about it. From my understanding, a PET scan looks at the activity of the disease, the current inflammation, whereas an MRI looks at the damage it has done, in other words, it focuses on the consequences of the disease.
I think PET is also far more extensive and more sensitive than MRI.
Like you, I’m not entirely sure on the difference between MRI and MRA though?
I think I have been a bit of an ostrich - I haven’t asked about damage etc. The Report received from the MRA seemed to say the aorta hadn’t been damaged but about anything else I’m in the dark. I’m due to see Prof Mason at the end of November so I will have a list of questions.
I have to say that I did not experience any prob with the MRI, PET scan or MRA using contrast but I did not enjoy the MRA.
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