Prednisilone and PET scan

[mtrafter]

Following 6 mths of on again off again multiple health issues including digestive and bowel infections, OA and PMR flares. I have seen both a Gastroenterologist and a Rheumatologist had numerous investigations to find a cause why now that my symptoms have settled my ESR is still out of normal range. At the peak of my ill health ESR was 91 now 41, CRP 9 now1. Was stable on 7.5 pred initially increased to 10.5 for 3wks have now tapered back to 8.5 over 4 wk period.

Fortunately none of the investigations identified any nasties, only some minor changes to gallbladder.

My Rheumatologist wants me to consider having a PET scan to check out large blood vessels and and other possible causes, but he does not feel it is all PMR related. To have this I have to reduce to 5mg for 2 wks prior to the scan !! I have never got below 5.5 in the 3 +yrs of this PMR journey and I was in agony!

My questions are:

Has anyone had to reduce quicker than they would like in order to have this scan and any tips for managing this reduction?

Has anyone had a PET scan while on a higher than 5mg dose?

Many thanks

[PMRpro Ambassador]

Longtimer has just been doing that to have a PET-CT and has posted about it. I did it last year - was told the pred dose wouldn't make any difference even though I was fairly sure it would. I got down to 7mg for several days - nothing was found on the scan. It wasn't as bad as I thought it might have been but have struggled a bit since - but is that surprising since the scan was the week before lockdown here in March last year!

There are several posts about PET-CT under Related Posts.

[mtrafter in reply to PMRpro]

Many thanks, I have had a good read of Longtimers journey not sure I can tough it out dropping so fast, still if you dont try it you don't know I guess. I might opt for a longer lead in time for the scan to allow myself a bit more time to reduce and hopefully lessen the adverse symptoms by giving my body time to adjust. Maybe!!

[PMRpro Ambassador in reply to mtrafter]

To be honest I suspect a really fast drop is probably easier than going slowly - hard but shorter.

[mtrafter in reply to PMRpro]

What's really worrying me is if it is a difficult fast drop to 5mg I have to maintain it for 2 weeks! Ugh!

[PMRpro Ambassador in reply to mtrafter]

Yes - but you will also have to maintain it for 2 weeks of you get there more slowly and the process is likely to be painful too.

[mtrafter in reply to PMRpro]

Sounds like I will be caught between a rock and a hard place! Decisions, decisions. Many thanks for your rapid responses much appreciated.

[Coffeebeans]

Hello, yes, I've done 2 fast tapers for scans - one a PET- CT and an MRI.

I found it manageable going down fast as it's time limited and you go back up afterwards. Yes it's painful and tiring but just take it easy and it is for a short while. I was at 5mg for both scans and they wanted me at 5mg for 7 days before the scan.

Take socks - my room was freezing as they keep it cool for the machines 🙂.

[mtrafter in reply to Coffeebeans]

Thanks for sharing your experience. Coffeebeans what pred dose were you at when you started your fast taper and how long did you take to get to the required 5mg?

[Coffeebeans in reply to mtrafter]

The first one I was at 15mg and I went down over a longer period which was worse! Dropped to 10mg immediately for 2 weeks then 7.5mg for 2 weeks and then 5mg.

This taper was twofold - to see if the pain returned because rheumatologist suspected a temporary inflammatory condition after a virus and secondly to get the scan if pain returned.

Second one I was on 14mg. I dropped to 5mg over a 3 week period. First drop straight to 10mg then a mg every couple of days until I got to 5mg. It helped that I knew what to expect.

Faster was easier.

[baxternoni]

I just had an MRA of my abdomen and one of my neck to check my arteries. This test does not have radiation. A Per Scan has much more than other tests. My cardiologist ordered them.