Reduction of prednisolone before pet scan

Oh thank you so much to all who answered to me regarding drop for pet scan .and as Eileen says 'what does she hope to achieve ' I truly don't want to cause a fair and am really tempted to not reduce and not tell her .what do you think .I can see that what you are saying makes so much sense .

It is your body?

Thanks michdonn .rhuemy says the need for drop is to show inflammation when pred is reduced for scan .if she had asked me to reduce pred just to try to get down on pred .then I would have refused but what do I say when she says it is necessary for scan .it's ok for her but I have to deal with the consequences.have I got a right to refuse the drop for pet scan though.

she says I have had PMR 7 years now and that there may be something else going on so needs to have a look .uh hopefully not yet I'm not the only one to have had it so long .

I know you aren't the only one to have had it so long.  I didn't have any investigation done for possible causes of PMR symptoms, but now that I know so much more it seems odd that all doctors don't do the "diferential diagnosis" investigation at the very beginning before subjecting patients to steroid treatment which might, in the end, turn out not to have been the right thing after all.  I hope things go well for you with the scan.  As you aren't being asked to come off pred completely you will probably be all right.  Take things very easy, eat those anti-inflammatory foods we hear so much about, and rest, rest, rest.  Take your pred again as soon as the scan is done!   And rest some more.  

I sorry!

As someone else says - bit late to be thinking about THAT! Wonder what she'd say to me? I've had PMR for 13 years and no-one here suggests it isn't, they accept I am one of the approx. 25% who require pred for much longer. An Italian study showed that 30% of patients still required pred after 6 years whether they had been on methotrexate or not. 

I'm still not clear what she thinks a PET scan will show - but contrary to what Tavidu says, I did find a research paper the other weeks that showed that pred DOES interfere with the result by suppressing the emissions. If you are currently on enough pred to manage the inflammation then nothing will show up of the PMR. On the other hand - I suppose it depends on what she is looking for.

Sorry for delay in replying as I've had a very emotional day at the funeral of a very dear cousin and when I got back a report of last clinic appt.on mat.and in the letter it says the purpose of the PET SCAN is to look for possibility of underlying large vessel vasculitis as have had it for so long.UH! also she told me in clinic to reduce from 8 to 5mg as explained in my post - NOW IN THE LETTER she wants me to go down to 4mg .I phoned her secretary to ask for to speak to her but she not In today.my scan is next Tuesday and I need to start the reduced dose on Sunday for two days so can't get to speak to her to ask if it is possible to do the 5mg as I think that drop anyway is too much.the secretary said she knows I have to reduce or the scan won't show any inflammation.i explained I am worried about a flair and need some assurance .looks like I'm going to have to do it anyway .

Her reasoning FOR the PET scan is theoretically OK - except I'm far from convinced that she'll find anything without you being on lower pred longer. And what is she going to do if it is? The management is still generally enough pred to manage the symptoms - there are forms of vasculitis where other drugs are used but if it is "just" GCA in other areas they don't generally use the rather horrible chemotherapy. 

I think it is very likely that I have a large vessel vasculitis and at least 2 doctors have agreed it is more than possible. I'm still on pred.

Oops sorry Eileen pressed wrong button .so what is she going to do if it is ? as you say .if you still been left on pred and are managing without chemo drugs then I may be in with a chance of a disagreement .but she does not seem to pay attention when I tell her of others experiences on forum.so fed up .must reduce tonight goodness knows what I'll be like tomorrow .

No - because I've been on pred for donkey's ages and it's assumed if it was anything it was GCA - which is treated the same and I'm (generally) fine. The original rheumy didn't even think it was PMR...

You'll probably feel pretty stiff - the first day may not be too bad unless you are pretty sensitive to the steroid withdrawal. Good luck anyway. And let us know what transpires!

Of course she doesn't want to hear other people's experiences, we are only patients with no medical education. The fact we have the disease is immaterial 

Hi eilenH and all who replied.just had a really bad time .my husband (who has pituitary tumour and nodules on both lungs for two years now)had a very bad seizure whilst having our tea .terrifying.and was taken to emergency by ambulance monday tea time.hence no PET SCAN done.still in hospital .hard to stop crying they have to find out what's happening to him .so won't be able to keep up with posts just now but thanks to all .

All the very best - hope they find why and are able to sort him out. Look after yourself too - been there done that and didn't to my longer term detriment. If you are in a mess you can't be there for him. xxxxx

True, but it is how they affect others. Look how politicians in this country are affecting the life's of others so they can give a tax break to the 1%. People in power must be aware of their actions and there affect on others and the results. If I could go to another Rheumy I would be there tomorrow! But I not, I walking with a smile on my face, happy to be getting better! Thanks again! 🙂