PET- CT scan

[Pawscat11]

Good Morning PMR hive mind. My new consultant (very young) here in Spain has reviewed my 3 years of PMR and is not happy with the treatment and high dose of steroids I am still on (15mg). She has ordered many many blood tests a 24 hour urine collection test and a PET-Ct scan to see where the inflammation is and look at Vasculitis. Is anyone familiar with a PET scan as I am unsure whether this is any use or even necessary. Any experience of this for PMR and not cancer gratefully received although I suppose ruling cancer out ( or not) cant be a bad thing.

[TheMoaningViolet]

Hi Pawscat11, I (and I am sure a few others) did have PET CT in order to diagnose PMR and yes, if the equipment is available, it's sometimes used to eliminate other problems and confirm the diagnosis. The issue is that you will need to be off Prednisolone if the result is to be useful, so I am not sure what your doctor's strategy is for that. At least this is my understanding; I had my test four weeks after a Depo-Medrol injection and the pain and stiffness had returned by then.

[Pawscat11 in reply to TheMoaningViolet]

She is leaving me on the prednisone as she cant get me off it and I am still in pain anyway. The plan is to just take it late on the day I have scan.

[TheMoaningViolet in reply to Pawscat11]

Hopefully, she would not resort to such an expensive procedure if she didn't think it useful.In my case, it was very helpful as it eliminated other possible causes of my symptoms, including GCA, and I was more receptive to the steroid treatment, once the diagnosis was no longer in question.

I hope you get the answers you need.

[Pawscat11 in reply to TheMoaningViolet]

Thank you. She is looking at GCA too as although I dont have the symptoms for it she wants it ruled out.

[Pawscat11 in reply to Pawscat11]

We have private health cover here so the state wont be covering the cost.

[winfong]

I had a PET scan to confirm LVV / extracranial GCA. No real way to do so otherwise (can't biopsy the old aorta).

[PMRpro Ambassador in reply to winfong]

Well you can - but only during open heart surgery!!!!!! Which is a bit extreme!

[Sophiestree in reply to PMRpro]

😆

[cycli in reply to PMRpro]

😀

[winfong in reply to PMRpro]

I think I'm gonna pass on that one

[PMRpro Ambassador]

It is probably the nearest to a definitive answer on PMR and extracranial GCA/LVV (large vessel vasculitis) although it isn't much use for cranial GCA (confined to the head). Unfortunately, I would say the likelihood of getting a really good image even if you do have vasculitis in the large arteries and definitely for PMR is very low at the dose of pred you are on - 10mg/day is more than enough to interfere with the inflammation shown up.

As MV says - it s a very expensive scan and a considerable radiation load so I hope she has thought of the effect of pred and checked with the imaging experts. It also rules out other possible causes.

[Grammy80]

Sounds like you have everything to gain and nothing to lose. You can see the value from what others have said. If I was offered a PET....I'd take it!💕

[piglette]

If you can get a PET scan good news, they are pricey and in UK pretty limited it seems. So good for Spain.

[Pawscat11 in reply to piglette]

Insurer haven't approved it yet. Its not the state system. Will keep you all posted.

[piglette in reply to Pawscat11]

Good luck anyway.

[Devoid]

Hi when I had pet scan was advised to reduce pred to 10 mg and not take the dose until after the scan on the day . Apparently more than that can reduce what inflammation they can see . I would definitely try to contact who is performing the scan as you wouldn’t want to be turned away on the day or the scan to be of no benefit.

[Rhoderick]

Prior to my Pet CT scan my rheumatologist reduced my pred dosage to 5mg per day for a week before my scan. Without a reduced dose I do not think the scan would have been effective.

[Kafkaontheshore]

I had managed to get down to 7mg pred when I had my PET-CT and my arteries lit up indicating LVV. I hope it isn’t LVV. Good luck.

[Pawscat11 in reply to Kafkaontheshore]

Thank you

[Sophiestree]

I was diagnosed with LVV via a PET CT but that was after over 16 scans of pretty much anything you could think of. At that point they must have decided cancer somewhere. I was phoned within two hours of getting home and told to go back for the iv methylpred. But obviously I had had no treatment prior to this. I always thought you needed to be on no or low pred to get an accurate picture.She sounds on the ball though in terms of listening to you and trying to get to the bottom of things for you.

[suzy1959]

I had a PET scan to confirm I had PMR as for 2 years all my Rheumys were convinced I didn’t have it! I’m trying to remember what dose of pred I was on. I think it was around 11mgs and my shoulders and pelvis lit up like fireworks!

[Pawscat11]

Latest update : Insurance company have refused to authorise scan as they only provide them in suspected cancer cases or epilepsy. Consultant is now trying to convince them to change their minds. In the mean time I am trying to get to 10mg of pred incase its authorised. Starting a week of 13.75mg first.

[PMRpro Ambassador in reply to Pawscat11]

Hmmm - one of the exclusions in diagnosing PMR is cancer - since some cancers can cause PMR-type symptoms.

[Pawscat11 in reply to PMRpro]

Consultant has just sent them this. 'The patient requires PET-CT to assess signs of VASCULITIS with the possibility ofComplicated AORTIC ANEURYSMS, because she has an atypical polymyalgic syndrome, of long evolution time

requiring high doses of corticosteroids for control. If vasculitis is confirmed in PET-CT, then she would be a candidate for

anti-interleukin 6 treatment; TOCILIZUMAB'

[PMRpro Ambassador in reply to Pawscat11]

Also valid - and the insurance lot are very behind the times ...

[Pawscat11 in reply to PMRpro]

Scan now authorised

[PMRpro Ambassador in reply to Pawscat11]

Excellent - hope you can get the pred down low enough to get the inflammation if there is any.

[cycli]

sounds like you have a good one. good luck.

[xdbx]

I had a PET scan recently when I had a sudden flare this Spring after a couple of years of being almost in remission with v low markers on 2 mg pred. I've been on Pred six years, initially with PMR, then vasculitis in upper arms - identified by ultrasound scan to examine why I had a faded pulse - and since then a general confusion about what, if anything, was going on or where.

I've been following a fairly rigorous auto-immune lifestyle/protocol for the last four years which my rheumy thinks has been significant in managing the inflammation on such a low dose with minimal symptoms. This also meant that when I had the recent sudden flare and he suggested a PET scan I was able to come off Pred completely for 10 days prior to the scan, and even though I felt very tired I was able to manage it ok.

No Pred for that long beforehand meant the PET scan imaging was incredibly clear. It showed vasculitis in the aorta - and nothing at all anywhere else! So it was a huge relief to know for sure and I happily went back on 20 mg Pred to treat the inflammation quickly.

My rheumy was very pleased we did it and said it was well worth doing in my case. However I'd question the value of such an expensive and potentially stressful scan and radiation dose if you can't reduce your pred dose enough to prevent it masking the inflammation and give a clear picture.

Wishing you well and best of luck with whatever you choose to do... 💛

[Pawscat11]

Latest update. Scan now approved. Need to jump to 10mg for a week before I have it. Consultant believes this will be enough as I am still in pain at 15mg so hopefully at 10mg the inflammation will show.

[xdbx in reply to Pawscat11]

👏🏻🤞💛