PET scan results and thoughts please :-)

[Pangolin43]

Hello everyone. I haven’t posted for a while and I hope you are all keeping well.

I recently had a PET scan which showed absolutely no inflammation in my body and no tumours. The scan was done because I cannot seem to get below 5mg of Prednisolone without flaring and the rheumatologist felt there may be an underlying cause for this. I am grateful for the scan as I had been very worried. When I had the scan I was taking 6mg of Prednisolone. My question is. Was no inflammation found because the Prednisolone is doing it’s job? If I reduce the Prednisolone will inflammation reappear? The rheumatologist is delighted and feels my PMR is on the way out! She now wants me to start a slow reduction. I’ll go with the DSNS on this site and monitor myself carefully as I have flared below 5mg three times now and it’s so disheartening and no good for my body to keep yoyo-ing. I’m feeling apprehensive. I’ve booked blood tests at the GP and will wait for the results before tapering. I’m in my fifth week of 5mg and feel good. I’m attending a physio group twice a week at Nuffield which I think is really paying off.

I still have bilateral swelling of ankles around the ankle bones and knees but not RA. Rheumatology think it’s osteoarthritis. I had an ultrasound on my right knee which shows a small ‘bakers cyst’. All this is perhaps pointing away from PMR. I guess I’ll go ahead with the plan as there is only one way to find out if my Polly Dolly PMR is beginning to recede. Any thoughts anyone?

[piglette]

Did you stop taking pred for the PET scan?

[Pangolin43 in reply to piglette]

No. I did ask and was told it wasn’t necessary.

[piglette in reply to Pangolin43]

Who on earth said that? They have not been reading the literature!!

[PMRpro Ambassador in reply to piglette]

There does seem to be some dispute ...

[Pangolin43 in reply to piglette]

The rheumatologist

[piglette in reply to Pangolin43]

There do seem to be quite a lot of rheumatologists that keep cropping up on this board who do not seem to be that knowledgable about steroids or PMR if it comes to that.

[Katkin1 in reply to piglette]

They told me not to stop taking the Pred for my PET scan also. When I was told that there was minimal inflammation showing on the scan, I mentioned that I was on 10mg of Pred at the time and on the day I had the scan. They said that was too low a dose to affect the scan result. Now everything moving forward is based on that scan and the fact that I have little to no inflammation showing!

[PMRpro Ambassador in reply to Katkin1]

That isn't what radiologists said - 10mg can exert a considerable damping effect on the signal. Of course I can't find it now. It doesn't affect the signal in a lot of things - but I suspect using PET-CT for PMR is a bit more sensitive,

[DorsetLady PMRGCAuk volunteer]

Would just throw in - as you have been diagnosed /treated for just over 3 years… and you have flared at same dose a number of times, perhaps your PMR is telling you that is the dose you need at the moment… won’t always be, but is for now.

As for not showing inflammation, if you were on Pred , yes that may be the reason.

I’d just have a rest from tapering for time being and give yourself a rest from the stress of that… and try again in the future. Sometimes is just not the right time.

[Pangolin43 in reply to DorsetLady]

Thank you DL. Sound advice 😀

[Pixix]

um…yes, I thought it was pretty normal to have problems below 5mg, & I certainly have! I tried twice using DSNS & had too many symptoms of adrenals being unhappy. Was recommended by Dr each time to go back to 5mg, as I have other medical issues that are fighting for attention! So I waited a bit, then tried again. Twice. On my third try I am down to 2mg…& holding. Dr doesn’t want me to try any lower right now, & I’m trialling pills for 2 other complaints (I just want off them asap, but realise that’s not a good mind set). I’ve had PMR for 4 years now. I do have OA in hands & feet, but think that’s pretty normal as we age, & expected as both my parents had it.

[Pangolin43 in reply to Pixix]

Thanks for your response. I’m going to keep to 5mg for a while longer.

[Pixix in reply to Pangolin43]

hope it goes well for you!

[Kafkaontheshore]

I had PET CT end of last year whilst on 7mg Pred and inflammation showed up in my aorta. I’d take your result as good news. Well done 😀

[Pangolin43 in reply to Kafkaontheshore]

Thank you I will 😀

[PMRpro Ambassador]

I had a PET-CT done at 7mg pred to look for large vessel vasculitis - none found. I don't know what showed on the scan result in terms of PMR but I'm still on pred and Actemra because I was stuck on between 15 and 20mg pred to be able to function. With Actemra I have been able to get down to 6mg with no PMR problems - but adrenal function, or lack of it, is now the problem. Don't think the fatigue is significantly worse but dealing with stressful events is - and there's a bit much official paperwork and decisions to be made around at present!

[Pangolin43 in reply to PMRpro]

interesting. The rheumatologist said that if my adrenals struggled to come back to life then I may need a maintenance dose of three milligrams for the rest of my life 😨

[PMRpro Ambassador in reply to Pangolin43]

You might need more than 3mg - depends on how you function at what dose. But cross that bridge if you get to it!

[Pangolin43 in reply to PMRpro]

I’m really hoping that once I start to reduce that everything springs back into action.

[PMRpro Ambassador in reply to Pangolin43]

Hope springs eternal!

[Rugger]

I had a PET-CT scan at 4mg pred and it showed up inflammation all over - aorta and its branches, as well as PMR around shoulders and hips.

I did the 12-week Nuffield programme last year and it showed me just what I'm capable of doing!

Good luck!

[Pangolin43 in reply to Rugger]

Thank you Rugger. I hope you’re doing ok. The Nuffield programme is excellent. Have you managed to keep it up?

[Rugger in reply to Pangolin43]

I did another 12 weeks of swimming once a week, but I didn't join the gym after the programme ended.

I stay as active as possible and am doing some of the exercises from the PMRGCAuk leaflet, many of which are the things we did at Nuffield.

[Pangolin43]

Good to know. 😀

[AtopicGuy]

I presume it was an FDG PET/CT scan, as this is the type that looks for inflammation. It can only detect a proliferation of immune cells outside the main organs, which always consume lots of glucose, even when resting.

A normal scan means they found no significant inflammation. Given that you are on a controlling dose of steroids, that's good news. It says nothing about what would happen if you reduced your dose.

Many doctors labour under the quaint assumption that an FDG PET/CT scan is capable of revealing even the slightest amount of inflammation. This is physically impossible. Any concentration of immune cells must consume more glucose than the liver before the shadowing on the scan is considered significant. They turn the contrast up and down before taking the picture.

I found this scan on the internet. It is of a severely ill GCA patient with raging inflammation in some arteries in the shoulders and neck.

FDG PET/CT scan of a GCA patient with severe inflammation in some arteries.

[Pangolin43 in reply to AtopicGuy]

Hi. Thank you for your reply. It was a PET CT scan. The rheumatologist did not use the words ‘no significant’ she said ‘absolutely no inflammation’ .. I guess I’ll have to wait and see what happens when I reduce again. I have a feeling the pain will return again as it has the last two times I’ve tried but fingers crossed. I’m taking Dorset Lady’s advice and staying out at 5mg for a while.

[Misseyj55]

Hi I’m Jo I’ve had PMR for the last 5 years and been on Prednisone for all of that time with varying degrees of dosage and pain management . In the last 6 months my pain has lessened and come back with revenge 3 times. I’ve got to tell you I felt quite helpless last time and put myself back on it up to a 15 mg dose for 5 days then reduced it back to 5 mg very gradually. I’m just off it again after reducing my dose at 1/2 mg on approx 7 day turn around . Mt last dose of 1 mg was last week I’ve gone cold turkey at this point. My doctor is hopeful, I’m feeling ok so far but 2 weeks will be the test point for me. It’s worth trying to get to a lower dose. I would encourage you to also use an OTC panadol osteo too to help with normal pain that at this point you may not be aware of.

No more than 1/2 mg off at “least a week or more before for you lower it again. I know it’s fiddly but if you cxx as n get down more it’s better for you .

Good luck with it all , I feel for you

Misseyj 55

[DorsetLady PMRGCAuk volunteer in reply to Misseyj55]

My doctor is hopeful, I’m feeling ok so far but 2 weeks will be the test point for me.

Actually it can take much longer than 2 weeks to know if your PMR is in remission…. months in fact. I hope it is for you this time.

[Misseyj55 in reply to DorsetLady]

In 2 weeks after coming off pred it will flairs on me really quickly it has in the past if it’s going too. The doc seems to think it’s going into remission after 5 years which will Be lovely for a while . I’m not cured just my body seems to be happier right now . . I find that comforting right now. And there are so many problems through taking pred for so long that need to be dealt with as well. So I’m hoping I can get past this 2 weeks and maybe a few more after that . And then some more . I guess that’s what I should have said . Thanks for your information . I’m taking it one day at a time .

[DorsetLady PMRGCAuk volunteer in reply to Misseyj55]

Hope both you and the doc is correct... what I was saying [clumsily] was that it can take weeks or even months for the inflammation to build up enough for you to realise it hasn't gone into remission.

Fingers crossed..

[Misseyj55 in reply to DorsetLady]

Yeap I get what you’re saying . It’s all a bit of a risk . I got down to 1 mg before stopping the pred. Thought about 1/2 for several weeks but things are going wrong in other directions so it was risk it or get worse. Either way things might not work out. I see the rheumatologist in about 4 weeks I think . He might do some blood work to see how things are going . Anyway I’m ok so far . But as I said it’s a gamble I’m willing to take right now. It doesn’t take much to get it back under control if it comes back with avengeance . Thanks for your reply much appreciated .

[Misseyj55 in reply to DorsetLady]

I did re flare and with vengeance. And to top it of came down with Covid. So it was at the 2 month mark. With the flare yes took me right of the scale of sanity. But it gave my eyes a rest from the pred induced cataracts for that short time too. Damned both ways right now. Anyway I was so fluid filled sore aching terrible mess that I started back on my original dose of 25 mg . And stayed on that for a week doc said no more if I felt ok , then reduced it by 5 mg to 20 mg , then came down with covid giving dog my granddaughters first birthday party lol 😂, so I’ve been on that dose since. It’s very lucky as I would have developed pneumonia as my lungs are crap. Now the battle starts to slowly decrease again to 7 mg and that’s it . I shall go no lower . I’m not going through this again regardless … I know it was a gamble , the ophthalmologist wanted to do my cataracts . So I needed to be off pred but after all that they postponed due to my other health problems and now .. we yo-yo… so all good I’m feeling tired but getting better and will try to follow the regime to reduce the pred . But I’m not going off it again … it’s just too painful and I can do without that in my life … thanks for the advice . I knew it was a risk but it was one I had to take for my eyes and it still left me with out anyway all good . There are a lot worse things that can happen in life that’s god sure … god bless to all … 💐💕

[DorsetLady PMRGCAuk volunteer in reply to Misseyj55]

Actually not sure why the need to be off Pred for cataract replacement - many aren’t… mine was done when I was on 9mg.. but I guess it depended on surgeon…

Fingers crossed things go more smoothly for you.,,

[PMRpro Ambassador in reply to Misseyj55]

If the underlying disease activity is very low, it can take months for the inflammation to build up enough to really affect you, And left, it can take you back to the start again. If you are as low as 1/2mg over months I find it difficult why anyone would object to staying there. A top GCA expert in the UK told us he often keeps patients at as much as 2-3mg longterm as it reduces the risk of relapse. I think that is too high, you should always try to get as low as possible. But also VERY slowly.