Just as a matter of interest - monitering protocols in North East UK

[Suzycat]

My consultant informed me recently, after speaking to the vasculitis team at Freeman Road Hospital, Newcastle, that it is now recommended practice to offer an appointment on a yearly basis, for an MRI angiogram, to keep an eye on the state of your arteries. I am currently waiting for my appointment and a bit worried, because I am claustrophobic but think I'm going to have to bite the bullet and see it through. It will be interesting to see how my aorta looks, after the ravages of vasculitis. I'm not sure if all areas of the UK offer this.

Just to let you know. Suzycat 🐱

[Riff1954]

Interesting. Did they specify a type of Vasculitis or is it suggested for all types?

[Suzycat in reply to Riff1954]

Hi Riff, I understood it to be for all types, but Im not sure in my own opinion about wether medium or small vessel vasculitis patients would benefit, mainly because Im unsure as to how smaller blood vessels would show up on an angiogram. Thats a good point Riff.

[Mikeyy]

For what type/s of vasculitis?

[Suzycat in reply to Mikeyy]

Hi Mike, read up.... My reply to Riff

[Dirock]

Hi - yes I find that interesting too.

It ties in with something I was told about 2 weeks ago by the Manchester vasculitis team at my regular check up. I am being referred to cardiology for a scan - monitoring the aorta was mentioned. Also a dermatology appointment is to be set up due to long term use of azapriothine - I think they said this would be an annual event too. I have had GPA for nearly 6 years. Sounds as if I some new guidelines are being implemented.

[Suzycat in reply to Dirock]

Yes Dirock, its encouraging... Ive had a quick look at the applications of mri angiograms for vasculitis... Its complicated lol, but it seems they do, but maybe for different reasons in relation to small vessel vasculitis, where clear delineation of small blood vessels might not be so good, but they do perform mri to look at or assess other damage that may be apparent due to the small vessel types. Ive seen pictures online of an aortogram and some of the branches that arise from the aorta look like medium sized blood vessels and this would make perfect sense to me, because arteries like the subclavian, brachial and carotid arteries can become inflammed in people with aortitis. 🐱

[roshough]

Can I ask where your consultant is? I'm under Freeman hospital vasculitis team but they didn't suggest regular cerebral MRI....in fact I had to push for a follow up one after 4 years. I'm worried that their interest /expertise is in Lupus not large vessel vasculitis.

[Suzycat in reply to roshough]

Hi roshough, my consultant is based at Wansbeck General Hospital, but regularly liases with the vasculitis team at Freeman. He was presenting a case presentation... My case, as a matter of fact, lol, so he got the information from them. I have large vessel vasculitis.

[roshough]

Just a quick follow up to this!!....i eventually got referred to a neurologist at the RVI who at last took my concerns about possible cerebral vasculitis seriously. She is ordering a further MRI and more advanced memory test and will see me again. She has also advised re tighter control of blood pressure. Its great to be under someone who listens!!!

[Maria_B in reply to roshough]

Hi Suzycat, I have never been referred for this test either but I heart a lot of people are referred for a PET scan. Not sure what the criteria is for this though? I have been wondering if I should have one. I had a temporal artery biopsy urgently in December 2016 when my journey began with vasculitis!. Mine is unspecified due to testing p- Anca +be plus MPO with reeings always above the high threshold of 135 apparently above this they can’t titre the actual reading. The vasculitis had already caused damage to my lungs and was told Ideopathic Pulmonary Fibrosis. It’s been an eventful journey with nothing improving at all. The fibrosis has now become a major focus as after 6 months of cyclophosphamide I was told it hadn’t worked so now about to progress onto Rituximab for 4 weeks. Like most of us who are sufferers of one type or another in the mine field of vasculitis. It is definitely a quick learning curve and you do have to read a lot of information to get any hold on the disease. I hope you get through the MRI ok, you can ask for a little help from your GP in the form of diazepam- it just relaxes you a bit to help you cope. Good luck with it,

[Suzycat in reply to Maria_B]

Hi Maria, my consultant told me that the mri scan shows a lot more required detail than the PET scan, but in diagnosing inflammation only, the PET scan is much more useful in diagnosis. I did ask for the open MRI scanner, but he told me the standard scanner is better for the amount of detail required when looking at arteries, so I'll have to grin and bear it. I'm not keen on having sedation. I hope you see some improvement soon 🐱 x

[Maria_B in reply to Suzycat]

Hi Suzycat, I did at one time work as a radiographer in MRI. The staff are usually very skilled at getting people through even lengthy procedures. I could probably find out how long the procedure takes with the latest equipment for you. When do you have the appointment? The diazepam is only relaxes - it is normally a low dose maybe one in the morning and then another a short time before the scan. I have known it to work for a good number of people who are claustrophobic. It is definitely not anything like sedation really, it just takes the edge off. I had some prescribed recently for a day where I felt awful and everything was in pain, stiff neck and no joint unaffected. It took a couple of days to get a level of relief but it didn’t make me feel sedated at all it only relaxes everything. I hope this helps you.

[Suzycat in reply to Maria_B]

Hi Maria and thank you for your help. I havnt got a new appointment yet, as I cancelled my original appointment when the MRI staff told me it was a standard bore scanner. Now, my consultant tells me there are wider bore scanners, but when I researched this, I found them to be 8cm wider... Better than nothing I suppose lol.

I understand fully about diazepam, but to be honest, I would like to overcome my problem with this issue. If you could, would you be able to find out for me, how long an aortogram would take.

I would appreciate that very much.

🐱

[Maria_B in reply to Suzycat]

Hi Suzycat, yes I am sure I can get that information for you!. There are different spec scanners measured in Tesla. So some of the timings may vary slightly- but I can find out at our hospital which would hopefully help?

Good luck I hope the wide bore works for you!

Take care

[Maria_B]

Hi Suzycat, my friend got back to me and on our scanner for a dedicated MRI of the abdominal aorta takes about 20 minutes. As I say a more powerful scanner might well be quicker. We always encouraged people to bring their own music to listen to- your place might be the same.

Most departments don’t mind you calling before to ask any questions. Once you have your appointment date there should normally be a contact number? That might help put your mind at ease. 😏

[Suzycat]

Hi Maria, thank you so much for that. 20 minutes isnt so bad. I'll let you know how I get on, assuming I get my appointment soon. 🐱