I have just had a PET scan in Guildford, referred by Prof Hughes and I thought I would share my experience regarding taking Pred. as there seems to be a lot of different advice out there.
Before the scan, the Prof had told me that I could carry on with all my meds, including my 11 mgs a day.
When I booked in, they said not to take that day’s pred until after the scan and the same with my diabetes medication. Otherwise, there was no problem.
I am hoping for some specific news regarding PMR ( after 11.5 years) or ? Non cranial GCA. Just need something to change!
Written by
suzy1959
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I think this us is one of the main problems with pmr that one doesn’t have with other conditions… gps differ within a surgery.. never mind the rheumys ….. bloomin hell!!!
I had a PET scan last November. The report was very detailed and set out exactly where the inflammation was seen. Mine showed LVV in most large arteries and also said evidence of PMR in shoulders and hips. Hope you get some answers.
I'm just curious, in your PET scan, how do they show evidence of PMR in shoulders, hips? Is it increased inflammation? Was it an increase in the actual size of the vascular system? Very interested in this.
I’ve just looked at the report again. They measure the SUV (standard uptake value) for each area scanned. This is uptake of the solution injected. I think they use the hepatic pool as a control and measure that on the initial CT scan you have before the PET. I have results for the major arteries varying from 4-6 ish but there is an additional report about the shoulder girdle, hips, ischial tuberosites and lumbar spine where uptake is significantly increased too. The findings are LVV for the arteries and active PMR for the other areas. They also picked up something else which I have been referred about. Interestingly the area of highest uptake in lumbar spine correlates with the not so good area on my dexa scan. I guess maybe an already weak area may be more affected by PMR but not sure???? All this is after 10 months of high dose prednisone as markers not settling 🙁
I was told by my rheumatologist not to take my meds until after the scan. The scan results showed a flare of LVV in my chest and had to increase Pred to 30mg from 5mg.
There are many different versions of PET scans and it is important not to confuse them. The one that seeks to locate active inflammation (especially in blood vessels) is the FDG-PET/CT scan.
Suzy it’s been 11 years for me as well. First, it was PMR and after two years I thought I was home free, but I was gifted with GCA. The prednisone doses were quite high then and for nine years, it has gone up and down. I am now and have been for a while prednisone dependent because of my adrenals. I am also trying to get down from 8 to six where I have been for the adrenals for many years. I feel for you, but I know I am stuck forever. Not so bad when you think about the other auto immune diseases we could have. I also have steroid myopathy from the prednisone and it is pretty bad. I use a walker. Again it could be much worse. Keep your chin up and smile. I’m 81 and never thought I would get there.
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