PET CT Scan

[pmrdays]

I have had PMR since Feb 23 and had a PET CT scan today. Has anyone else had one of these? what was the outcome my blood markers have been high during the whole time, I have tapered prednisone from 15 mg to 4.5mg.

[Allotmental]

I had a PET scan but it was just before I started taking Pred. It led to an immediate diagnosis of large vessel vasculitis.

[pmrdays in reply to Allotmental]

Thanks for your swift reply l, I might have this is it treatable 😀

[Smellydog9 in reply to pmrdays]

I had the same result. I went back to 60mg prednisone and started tocilizumab injections. Now 6 months after PET scan. Hope your scan doesn’t show LVV.

[Allotmental in reply to pmrdays]

It is not curable but can be managed. In my case by prednisolone ( 3 years now) and Methotrexate. I certainly don’t experience the same level of pain and absolute disability that I had with PMR, but fatigue is a real challenge and lots of bizarre symptoms come and go. I take the approach of living with it and accepting each day as different - that for me has helped me to adapt psychologically. Good luck, if you do get a diagnosis the support and information from Vasculitis UK is excellent.

[Sharitone in reply to Allotmental]

I also had one which led to diagnosis of LVV, even though I had already been on 60mg pred for 3 weeks, and pred for PMR for one year.

[Rugger]

I had one 3 years after being diagnosed with PMR and it showed up inflammation in my large vessels as well as the areas of PMR inflammation. Wait for your results and your Rheumatologist will decide what to do about treatment. (If it is GCA-LVV then the treatment is prednisolone, with or without another medication not used for 'simply' PMR.)

My blood markers were also high and I had new pains, which prompted the PET-CT scan.

I had the UK's ration of Tocilizumab (limited to 52 weeks) and now continue with prednisolone.

Best wishes.

PMR: 2016

GCA-LVV: 2019

[pmrdays in reply to Rugger]

Thank you for your reply high makers results in July so I will see what is said then.

[PMRpro Ambassador]

I had one but not until I had been on pred for years. My rheumy was looking for ongoing LVV really since my PMR has lasted such a long time and the pred required was stubborn at 15mg and more. My markers have never been out of normal range except once when CRP was high on a day I was having bad atrial fibrillation episodes and another single time ESR was about 32, normal for me is low single figures. At the time of the PET-CT I was still on 7mg, couldn't get any lower. They said it wouldn't matter but I'm not convinced,

It hasn't made much difference as I live in Italy and my rheumy put me on tocilizumab anyway. With that I have have got down to 7mg where I am completely stable. At 6mg I get returning bicep tendinitis which makes using my arms very painful.

[pmrdays in reply to PMRpro]

Thank for you reply it’s interesting to read this my markers have been high and never went down that is why they wanted the scan don’t get results until July so it’s just a waiting game 😀

[PMRpro Ambassador in reply to pmrdays]

piglette also has persistently high markers

[TheMoaningViolet]

Hi, I've had a PET CT early as a tool to diagnose PMR. It was very useful as it eliminated the fear of other more frightening diagnoses and confirmed that I did have PMR, which allowed me to accept the treatment (steroids) and understand how to manage my recovery. I've had a steroid injection several weeks before the scan, so the magical effect of that has more or less disappeared. I had a scan on a Saturday, my doctor called me with the results on Sunday and I started on 15 mg of Prednisolone on Monday as soon as I collected my meds.

[PMRpro Ambassador in reply to TheMoaningViolet]

You're back!! Sorry to see that. However, the time scale of stopping pred to developing symptoms is absolutely typical of the underlying autoimmune part being at a very low level and the dripping tap of inflammation building up far enough to be felt. Had you stayed on 1mg, possibly even 1/2mg, it might well have been enough to keep it under wraps. With a bit of luck you will race down the doses. And actually, we'd probably have suggested trying 5mg first - surprising how often that works. But at least there is no argument - it IS PMR.

[TheMoaningViolet in reply to PMRpro]

Hi, thank you for your message, but I was talking about my initial diagnosis back in 2019. I am still in remission since September 30th last year, however, we are going through GCSEs with my daughter now, so I would not be surprised if something goes terribly wrong with the level of stress we are all experiencing and the lack of sleep I am suffering from as a consequence. I keep an eye on the forum and get involved when I can say something helpful and I still support the charity. Vx

[TheMoaningViolet in reply to PMRpro]

It's my dodgy use of indefinite articles that threw you. 😉

[PMRpro Ambassador in reply to TheMoaningViolet]

Oh good, that's a relief! It just sounded all rather up-to-date!!!

[Oxfordboy2]

Hi I initially had a diagnosis of pmr/ GCA for which I was treated with steroids.After tapering to zero and feeling great I was given a routine follow up appointment in the rheumatology department.I had been off steroids for 3 months but my crp was in the high 30s.Because of this they decided to give me a PET scan and discovered LVV.I have been on MTX ever since,around 27 months.My latest scan this year showed improvement.

[Longtimer]

Yes, had a PET scan about two years ago....was still in pain and severe fatigue ( still the same) was on 5 mg (still am) Rheumatologist said results showed no inflammation, so no longer PMR, now Fibromyalgia.....not convinced, especially being on 5 mg at the time.....I have on two occasions taken 2 mg nore to get me out to a family celebration......felt a bit better....compilcated because Fibro is not supposed to react to steroids!....

[krillemy]

I have had 2 PET CT scans, one at the beginning of PMR (before) and later a new one during a time when I was not on Prednisone. They both came out normal, but when I now read the scan results, they were actually only ruling out cancer and other causes, not looking for PMR or vasculitis. According to the literature, scanning cannot always diagnose PMR. If it could, we would all be in a better place regarding diagnosis

[pmrdays]

thanks for the reply that’s what I was wondering are they looking for internal cancer and other things 😀

[AtopicGuy]

The scan for PMR/GCA or vasculitis-causing inflammation is called an FDG PET/CT scan. The FDG bit refers to the special glucose injected into the blood, which emits particles called positrons. Every cell in the body consumes glucose, and the more a tissue uses, the more Positrons are Emitted in that area per second. Organs such as the brain consume a lot of glucose, even when one is resting, so they show up black. The contrast is adjusted until the liver shows up light grey, and any blood vessels appearing darker than that are deemed to be using too much glucose, probably because lots of immune cells are active in that area. The picture shows a severely ill GCA patient. Clear signs of inflammation are visible in the shoulder and neck arteries.

An FDG PET/CT scan of a patient with severe GCA and inflamed neck and shoulder arteries.

[liz6620]

Are there any potential issues with the glucose based dye injections if one is type 2 diabetic? I am waiting for a PET CT scan to check for wider vasculitis (I have GCA) but would prefer to be aware in advance if the glucose could be significant to cause any issues. I take Metformin 500mg once a day. I am not as in control of my sugar levels as I should be. Thank you in advance.

[PMRpro Ambassador in reply to liz6620]

I suspect the greater question will be how your poorly controlled glucose levels may impact the PET-CT scan and I think it may be a good idea to call the radiography department where the scan will be done to ask them if there is any action you should take,

This is a patient advice sheet from a hospital in Seattle

uwmedicine.org/sites/defaul...

and they say to contact the department 2 weeks before the scan.

I have just managed to find an NHS sheet for the Christie in NW England. They actually mention that the glucose in the test is not enough to affect your diabetes but also request you contact them beforehand for other instructions.

christie.nhs.uk/media/rxmii...

By the way - if you have an important question that you would like to have seen/answered by more than the author of the thread, DorsetLady or me, it is better to post a new thread because most other people rarely go back to look at an existing thread once they have replied to it. DL and I will always see and reply.

[liz6620 in reply to PMRpro]

Thank you PMRpro. It's very useful to have this information now than to arrive on the day unprepared.

I note your advice about posting a new thread too. I was in confused.com mode yesterday . 😊

[DorsetLady PMRGCAuk volunteer in reply to liz6620]

Have seen it - but PMRpro’s has replied -and we all have confused.com days 😊