PET-CT Scan for LVV: Hi all, I am suspected... - Vasculitis UK

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PET-CT Scan for LVV

Hi all,

I am suspected of having LVV, specifically Takayasu Arteritis. My rheumatologist is letting me choose between a PET-CT Scan or an MRA. I don’t know which to do.

I think the PET-CT would be more extensive, but one thing that worries me is that the radiation could make my flare worse. Have any of you encountered that?

Two months ago I actually had a CT scan for a different issue and a few weeks later my flare went wild and I ended ip in A&E, so I wondered if there could have been a connection with the radiation I had received. Is radiation known as a trigger for vasculitis? In the past I have never found this to be the case.

I am also worried as I’m in an active flare that the radio tracer they inject could have an adverse affect.

I really must decide between these two scans but don’t know what to do. Any advice or info on your own experience would be much appreciated!

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Hi I had a pet ct scan 3 weeks ago and LVV was diagnosed, the problem I experienced following the scan I felt was caused by reducing steroids very quickly as they said I needed to be on 10 for the scan. Didn’t feel the scan had caused any problems and the results were very clear so treatment now steroids and methotrexate

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Hi Devoid, thanks a lot for your answer. Could you tell me also, in terms of the radiotracer, did that cause any ill-effects when it was injected?

It’s just that, being so unwell and my flare being so active, I really worry of doing anything that will tip it over...

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No I don’t think it did, I wasn’t well when I had it, having to reduce the steroids when I didn’t think they had got on top of the inflammation,,but I do think it’s worth it for a conclusive diagnosis

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Thanks for your reply Devoid. I think I will try and do this PET Ct, I really do hope it doesn’t tip me over though. I hope now you have a diagnosis you will get better and your pain will go down..

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My LVV was diagnosed with a PET scan, but since then has been monitored by MRAs. I can’t remember the PET scan causing me any problems except that of a long procedure when I was feeling thoroughly unwell! On the other hand the inflammation showed up really well and was a big help in diagnosis. You might also find that the PET scan is easier as it’s not as enclosed or anything like as noisy as the MRA.

Hope that helps - good luck

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Thank you for your reply. That is what my rheumatologist told me was frequently done: PET-CT for diagnosis and MRA for follow up. When you have your MRA is it only of your aorta though? Because on my referral for the MRA (I have a referral for a PET-CT and for an MRA so I can choose) it says only MRA aorta whereas on the referral for the PET-CT it is aorta and major blood vessels. Does your MRA pick up on the aortic branches also or only on the aorta?

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Mainly aorta, though they also look at my carotid arteries as they are also affected. The blockages in the arteries of my arms are monitored with ultra sound as that seems to work better. I’ve also just had an echocardiogram as they were checking my heart valves......they are leaking a bit, but not enough to worry about! But the main point about the PET scan is that it shows up any inflammation very clearly, and once they know where each site is, they can monitor with the MRA, and

don’t need to look at some areas again.

As a scientist I do find the machines I’ve met over the last few years really fascinating. It would have been nicer to learn about them without the LVV though.

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Thanks, I definitely see how useful the PET-CT is compared to the MRA as it is so extensive. Especially as a first diagnostic test, it seems to have a lot of advantages. I agree, those machines are very interesting, it’s just a shame they’re all so unhealthy!

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I have had two PET/CT scans for large vessel vasculitis (I'm assuming that is what LVV is) and had no problems with either of them. On the other hand I was feeling perfectly well anyway and only had the first one because my rheumatologist thought that my blood test results indicated that I might have it.

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Was the scan negative results then?

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Thanks for your help. It’s good to know others were ok with the scan. What worries me though is specifically because I’ve been so unwell..

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My Tak diagnosis was by PET CT scan - I didn’t suffer any probs with the radiotracer but it really high lighter the extent of the Tak.

I recently had an MRA which I found much more difficult. I do not like confined spaces. They also injected some sort of tracer which I didn’t expect. I had the MRA to provide a base line for any damage caused to arteries.

I’m still here so neither can have been that bad. Everyone is different and copes differently. I’m surprised your consultant has left the choice to you.

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Thank you. Could you tell me, at the time you had the PET-CT were you very unwell or ok?

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Yes I felt very unwell at the time of the scan, was advised to drop pred quite quickly down to 10 prior to scan and also had2 bereavement in the 3 weeks before so having to travel,which I really felt impacted on things. Definitely think the scan was a turning point, where it could see inflammation mapped pain so it at least stopped me thinking I was going mad !! Not that you want anyone else to be going through this, but it certainly helps not feeling alone with it xx

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Thanks, it helps me to know others did it whilst being really unwell. It must be such a relief for you to finally get your diagnosis. I agree, definitely helps not feeling alone with it!

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I was unwell but not as unwell as a lot of others with Tak on this sight. I had stopped playing tennis because I could not lift my arms to serve or run without becoming breathless. I was always tired but could not sleep because I spent my nights changing my clothes through night sweats and horrendous heart burn which was in fact my inflamed aorta. I had loss a stone and a half in weight. I had no started any medication. I had no pulse in either arm and still cannot get a blood pressure reading from my right arm. Sorry for the long explanation but because I did not know how serious Tak was I carried on regardless.

My PET scan lit up like a Christmas tree and was very popular with the Tak consultants and radiographers! I had no ill effects from the PET scan and had it at the peak of my illness. I fully understand your hesitation because who really wants to be injected with radiation but my understanding was the PET scan the way to really confirm the diagnosis. The PET scan I had in Nov 2017. The MRA in May this year - my understanding is that the MRA shows any damage caused by the condition.

I don’t know how old you are or how badly Tak is effecting you. I was 59 yrs at diagnosis and very healthy and fit apart from a slipped disc which didn’t really cause me a problem.

I’m assuming Tak is suspected because of your symptoms and the fact you have high ESR and CRP blood results?

If I was you I would ask the consultant which he thinks you should have.

Best wishes - this condition is frightening but can be treated.

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Thanks you for your reply. Yes, TAK is suspected because of high ESR&CRP, a haemorrhage, a TIA, and other symptoms. I stopped exercising a few years ago as like you I just couldn’t anymore and now, even exertion (tidying, going up stairs etc) is difficult. I am almost 32, so can’t blame it on age!

I did ask my consultant which he thought was better and as you all are saying, he thought the PET-CT was more extensive but also more expensive, that’s why he left it up to me. You must be so glad to have a diagnosis now, I hope you are now feeling better.

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I am sorry you have to go through this so young.

I had the PET scan privately but covered by med insurance at time. Unfortunately the insurance won’t cover chronic illnesses and so I’m now under the NHS with Prof Mason at The Hammersmith who is one of the experts in Tak. My private consultant was his senior when Prof Mason was a Register and so I was lucky to get on his team because The Hammersmith is not in my area.

I take it your consultant an expert in Tak and vasculitis?

I am now down to 2.5 mg Pred n 12.5 Methotrexate from 40 mg Pred. Back at playing tennis (badly). Some days are feel totally normal and can do lots and other days not so good. The MRA showed no damage to aorta or heart but my arms are still weak and ache. I count myself lucky considering the horror stories of other sufferers. Just need to get off these drugs so I can enjoy a glass or two of wine without worrying about my liver function!

If I was you I would have whatever gives the best diagnosis. If you’re seeing a private consultant - try to get your GP to refer you to one of the centres that specialise in Tak - addenbrook or The Hammersmith for example.

Best wishes and I hope they get you on the right medication ASAP.

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Over the last two years or so I've had 2 PET scans and at least 8 CT-scans in the monitoring of my GCA. I've also had a load of X-rays. I've never knowingly suffered any side effects from any of them. There is a small radiation risk because each scan is roughly equivalent to about a years worth of background radiation. But it's better to have the diagnosis (PET scan) and monitoring of the growth of your large vesels (CT scan), than to just let it grow towards a fatal rupture without knowing nor taking any pre-emptive action (surgery). However - everybody is different and we all have varying reactions to tracers, scans, and drugs etc. Your doctor/rheumy should be able to assess suitability. Far as I know - the MRI is just a big noisy magnet and tracer isn't used - it might just be slightly disorientating for a few mins after (as it was for my wife). Try not to worry, the doctors know what they're doing is my best advice.

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Thanks for you reply. Yes, that’s what I think too, better have the diagnosis obviously but I am still so worried for the scan. As you say, everyone is different so it’s hard to predict how one will react. Were you unwell at the time you had your scan?

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Hi Mia - yes I have GCA which was diagnosed from the first pet scan (along with other symptoms). The second pet scan a year later was to verify the pred was controlling the inflammation. The disease has weakened my aorta and accelarated the growth rate of two large aneurysms - so the ct scans (every 3 mths) were used to measure the growth rate of the aneurysms. One of them had to be surgically replaced 16mths ago cos it was getting too large and close to rupture (over 5.5cm diameter). I was struggling to breath and my BP and heart rate were up and down like a yoyo. So I had to have a new aortic arch attached to my heart, carotid artery, and descending aorta. The other one (on the descending part) is large but not quite in the danger zone yet - I just had my annual scan last Sunday and I'll find out in a week or two if another op is required or not. Over the last couple of years I've had at least 8 ct scans.

So like I say - try not to let it panic you - just think of me and how many scans I've had and you're one scan will seem like a walk in the park. If the docs think for some reason you can't have one then they won't do it - they'll find another measure. :)

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