Petscan results

[Poppy1647]

So I had my Petscan results and it's not showing vasculitis! Which is good news but it leaves no explanation for all my symptoms and the fact that the more I reduce the Pred the worse my symptoms get. I dont know if being on 40mg when I had the scan had any effect on results but they said not.

During this time I have also developed peripheral neuropathy and my rheumatologist has no idea what's caused it.

So im back in limbo with no idea what's wrong with me and Doctors have no clue either. My rheumy says he wanted to see me sooner than my appointment which is in 2 weeks but due to Covid-19 clinics have been shortened & cancelled etc. He is not discharging me from his clinic as theres still no explanation for the initial inflammation & symptoms! He has started me on Pregabalin for the peripheral neuropathy. I am now on 30mg Pred & reducing by 5mg every week so we will see how it goes. Last bloods done at 40mg were ok, rheumy says he expected these to be ok due to amount of Pred I was on.

My rheumy says he is not keen to do any more tests at this time due to the amount of radiation Ive been exposed to, so I have no idea what his plan is till I see him.

Thank you all for you support and kind words over the past 2 months, it made this nightmare bearable.

[SnazzyD]

When I had my PET scan I had been on Pred for 3 weeks, a few days on 60mg and the rest 40mg. The radiographers were doubtful but went ahead anyway. Since then every doc I’ve seen I have brought it up with them and it has always gone the same way. They say it is fine and when I ask them if they would be happy to diagnose on the basis of that with my Pred they go quiet. A few have said it was a waste of time. My latest doc said I had been put through a lot of radiation for nothing and that she wasn’t happy to repeat it now in the absence of symptoms for that reason. I am very annoyed because I can’t now have it done now I’m on 0.5mg. She then said I should have an ultrasound of my temporal arteries and my armpit arteries to check for narrowing instead because it was safe. I went to have the U/S but the sole doc in the hosp who can do this type of u/s only does the temple, not armpit. So I’m no further forward. My point is, be really sure that it isn’t being done in desperation for a diagnosis with no thought to it’s risks weighed up against its validity.

[Poppy1647 in reply to SnazzyD]

Thank you SnazzyD for your response,

Its such a frustrating place to be, my worst fear is being misdiagnosed. Im taking comfort in that my rheumy is not throwing the towel in & discharging me based on the Petscan results. He acknowledges that there is an illness

The whole experience so far has been hellish, i have been off work nearly 3 months unable to function due to symptoms.. still not fit for work

[PMRpro Ambassador in reply to SnazzyD]

watermark.silverchair.com/j...

sorry about the length of the link!!!

[SnazzyD in reply to PMRpro]

When I get through it says the session has expired.

[PMRpro Ambassador in reply to SnazzyD]

Drat - saw it was them and did wonder if that was the one ...

Try this

academic.oup.com/ehjcimagin...

The title is:

18F]FDG positron emission tomography in patients presenting with suspicion of giant cell arteritis—lessons from a vasculitis clinic

Stephan Imfeld1†, Christof Rottenburger2†, Elke Schegk3 et al

,

[PMRpro Ambassador]

Who said no? A study did show that even 10mg of pred is enough to affect the results in PMR/GCA - when I booked mine I did ask the person I spoke to and they said it didn't matter but they are far more used to PET being used for cancer where pred WON'T affect the takeup of the tracer. I did get my dose down to 7mg for the couple of days before the scan - whether there was any inflammation at 11.30am when the scan was done I'm not sure, but I had plenty of symptoms later! Lord only knows when I will get the results - all non-urgent appointments are being cancelled at present.

[Poppy1647 in reply to PMRpro]

I asked the staff there & they were more concerned about the glucose levels!

My results took 2 weeks to come out.

We just going to see what happens. Today Im down to 30mg & feel dreadful 😥

[SnazzyD in reply to Poppy1647]

Yes because High glucose can ruin the result if they use the radioactive fluorodeoxyglucose. When I mentioned the Pred they did frown but decided doctor knows best.

[Hidden in reply to Poppy1647]

And high glucose can contribute to peripheral neuropathy. What was hba1c?

[Poppy1647 in reply to Hidden]

Not had hba1c done yet

[Hidden in reply to Poppy1647]

OK. Ignore until you do! ☺️🌻

[PMRpro Ambassador in reply to Poppy1647]

When I asked my rheumy about it he did say yes, I should get as low as I could. They are measuring the inflammation because inflamed tissue takes up more glucose in the test and it lights up more. He also said it was only really necessary to get really low for a couple of days - after all, there is the adrenal problem to manage as well - but if you take too much pred, there isn't as much inflammation to creat the image.

But then, my rheumy did write the paper for EULAR about the use of imaging ...

[Metalmama]

Have you had an MRI with IV dye before your symptoms started??

[Poppy1647 in reply to Metalmama]

I had an MRI the day I 1st presented to A&E & that was noemal.