MRI today.. just curious

[Phoenix51]

My GP has requested an MRI scan of my head and cervical spine ( had to look it up as wondered why my cervix was involved 🤭) it’s come through quickly and I am going to the hospital later on today, although I am apprehensive about leaving my ‘shielding status’ to go I have weighed up the cost/benefit and on balance think I should go and am grateful that I have had an appointment through so quickly. My GP has requested the MRI to rule out anything else that may be causing my occipital/neck pain other than the GCA, which seems sensible to me? She feels only 80+ % confident of the GCA diagnosis due to some atypical features and says she would feel more comfortable about me being on high dose steroids if there was more ‘evidence’, in the absence of this she is trying to rule out other things. She is also trying to seek advice from a Vasculitis consultant which I’m grateful for as my other posts give details of my experience with two rheumatologists. My question is, as I am back up to high dose steroids (40mg for the last 4 weeks, tapering from 60 in January) will this affect the results of the MRI scan ie. will the Pred have reduced any inflammation to the point that it won’t be visible on the scan? Was hoping the scan might also show the existence of GCA, if there at all, but I’ve read conflicting opinions/research on the merits or otherwise of MRI scans as part of the GCA diagnosis. Anyone with GCA had an MRI whilst on high dose Pred? Anyone had GCA confirmed by MRI? I had an ultrasound of my temporal area which was negative but my pain was never in that area only occipital plus when I had the scan I had been on Pred for 3 weeks.

[jinasc]

link.springer.com/article/1... Perhaps your GP would like to see this..............it was only published last year.

[SheffieldJane]

My head MRI was clear in February, GCA diagnosed in March. I have Cervical Spondylosis and get severe pain in the occipital area. I think you are right to be concerned that Prednisalone will mask the results of this scan with regard to GCA confirmation. It may show something useful in the arthritis area however.

Good luck with it. I would definitely have gone for it too and 80% would have been good enough for me. She sounds reassuringly thorough.

[PMRpro Ambassador]

Is she asking for the MRI to confirm GCA or to rule other possible causes of the occipital pain?

Have you seen this - the definitive comment on imaging in GCA etc.

ard.bmj.com/content/77/5/636

Recommendation 4 says "high resolution MRI of cranial arteriesii to investigate mural inflammation may be used as an alternative for GCA diagnosis if ultrasound is not available or inconclusive" and "MRI might only be feasible if emergency referrals for GCA can be implemented. It is strongly advised not to delay GC therapy due to outstanding imaging, and MRI of cranial arteries needs to be performed immediately within the first days of GC therapy in order to avoid false-negative results."

so I think you are right to be sceptical about the value given you have been on high dose pred since January.

[Phoenix51]

Thank you for replies and for links which I read with interest .. I will go for the scan and see what that brings .. in a strange twist I have just had a call from the hospital to say that a nephrology consultant is going to see me tomorrow afternoon following a referral from my GP. why would I be going to see a nephrologist? I did have kidney issues 2 years ago but that cleared up .. I thought GP was seeking advice from vascular specialist ... I trust she knows what she’s doing but I’m confused ...

[PMRpro Ambassador in reply to Phoenix51]

A nephrologist may be an expert in small vessel vasculitis. GCA isn't a small vessel vasculitis though so I would check with her before you go if you can.

[Tamtan2]

Hi I have had a mri while on 45 mg prednisone which confirmed my Gca as active. I am now on 20 and feel quiet well although Ihave come off my methotrexate and Alendronic acid as these drugs were making me feel so ill the difference is unbelievable I’m new to health unlocked but have greatly benefited from the shared information I’m more comfortable and less worried now.

[Phoenix51]

PMRpro I followed your advice and asked GP about referral she has come back to me to say the nephrologist that she has referred me to has experience of large and small vessel vasculitis and she trusts his clinical judgement. He was recommended to her by a vascular specialist in Liverpool she had contacted for advice. I’m happy with that. Tamtan2 thank you for your response re. MRI.. I went yesterday evening and asked the radiographer if it would be possible to identify GCA on the scan and she said no, it’s just to rule anything crises out. She also said the results won’t be affected by my high dose Pred... So we shall see.

*For anyone wondering whether to attend a scan appointment in this current climate - my experience was generally positive. The hospital was like a ghost town and staff were well set up and organised .. a friend had given me a mask which psychologically made me feel a bit safer ( I know 😉) but I was surprised that some people in the hospital did not appear to be respecting social distancing, Including staff, this ‘ panicked’ and surprised me somewhat and made me extremely vigilant, giving a wide berth to anyone I saw approaching. On balance though I’m glad I made the decision to go. I’m back there this afternoon to see a nephrologist. Strange times.

[PMRpro Ambassador in reply to Phoenix51]

Yes - thought that might be the case. Same with the MRI.

Do tell us what happens this afternoon.

[Phoenix51 in reply to PMRpro]

A late update .. today’s appointment went really well and finally I feel that I have found a dr who is knowledgeable and willing to listen. The consultant is a nephrologist but clearly has a lot of knowledge/experience in large vessel vasculitis, he says regardless of ‘atypical’ features, my GCA is textbook and should be treated as such. He also said it’s possible that the prior issues I’ve had with my shoulder and hips could well have been PMR grumbling away which is why I had relief of those symptoms when put on the Pred for GCA. He says I need a slow taper - he agrees my previous taper was too fast and probably led to my most recent flare. He has given me a new plan and wants me to have blood tests every time I reduce dose which I have never had before. He has also said he will take over my case as he feels one person should be managing the condition and in charge of the plan. He asked a lot of questions and really LISTENED and seemed genuinely interested in what I had to say. He also was very clear about what was his opinion/belief and what was factual. I can’t tell you how much better I feel tonight, it’s been a bumpy road since January and I have felt completely adrift, although I feel very lucky to have had the advice and support of this group and my lovely GP. whilst a GCA diagnosis is not one anybody would wish to have I now feel more confident and hopeful going forward .. the consultant said it may well be a long road ( and this is bourne out by the experiences related on here) which sounds daunting but with good care I’m hopeful that things may be a bit more positive 🤞. And the big bonus ? I didn’t have to go outside of Wales in the end! On that note I received my shielding letter yesterday from welsh govt. only two months late 🙄.

[PMRpro Ambassador in reply to Phoenix51]

Oh hallelujah! Who is this paragon of virtue? Or which hospital is he at? In London I might have suggested a nephrologist at one particular centre. Would never have occurred to me in Wales. This may be a breakthrough for the people in your neck of the woods who have been struggling.

[Phoenix51]

Sorry for the late reply PMRpro , he’s a Dr at Wrexham hospital, he is based in the kidney/dialysis unit there .. I think I may have been lucky as he was able to see me because of usual clinics being cancelled ?? No matter the reason I’m just glad I’ve been able to see him and am now under his care.

[PMRpro Ambassador in reply to Phoenix51]

Not late at all - but it may be a very useful bit of info. Until he moves ...

[Phoenix51]

Update - MRI scan clear, GP says she wanted to rule out disc inflammation or anything else that might have caused head and neck pain, since this isn’t the case she said it adds even more weight to the GCA diagnosis. thanks for advice

[PMRpro Ambassador in reply to Phoenix51]

Not sure whether to like or not!