following on from my last post , my PETscan is next Thursday…. I still don’t know what I’m doing….Im pretty sure I’m having the scan but not sure what I’m going to do with the results…I’ve been on pred 14 months , am at 3.75 mg , starting dose 15mg. Am happy with how it’s going. I am having the PETscan to see if my femoral arteries are still inflamed. I had a PETscan last April and the results were inconclusive , they couldn’t say what they were blocked with but thought it could be focal vasculitis. If the scan shows inflammation they will prescribe methotrexate to try and get rid of the inflammation. I wonder if I’m rocking the boat with my pred journey, wondering why it’s took 18 months to get to this decision, the PETscan last year was to check if my arteries were inflamed, how will a second scan be any clearer? Sorry to keep wittering on, it just keeps going round in my head , I know pred has lots of downsides but it’s kept me pretty pain free, if I just stick with the pred alone will the inflammation eventually go and will that mean if my fem arteries were inflamed they will open up? 🙈 thanks for reading…….
Sorry me again!: following on from my last post... - PMRGCAuk
Sorry me again!
Never apologise for posting if something is worrying you… it’s why we are here.
It’s not so much as what you are going to with the results, but the doctors ..and no point in worrying until you get the results.
Do hope you get some answers soon..
Thank you
You don’t know what you’re doing because you are not in the future where you have the results. This is the agony of having to wait for an outcome. To ease the anxiety it is tempting to think through every scenario which quickly spirals because it doesn’t ease anything. Unfortunately we can’t give you answers without the same information that you lack. At the end of the day, it is up to you whether you take the MTX even if they want to prescribe it. They don’t have a crystal ball either. All we do in this game is doing the best we can with the information at hand but the wait for it can be excruciating.
Thanks
The underlying autoimmune cause of the inflammation does usually wax and wane and finally burns out and goes into remission. But they gather all the information they can to get some idea of what is happening - as the others have said there is no point worrying about it or what they will/can do. Cross bridges as you get to them and let the medics work it out.
thank you
I totally get it, you are thinking 'out loud' and creating a 'what if' scenario. Nobody has the answers but it really helps to offload it somewhere with the reassurance that someone has heard.
Thanks
Hi Phoebenooby I have only been on MTX three weeks and have a blood test next week. I am still taking pred with it, so far not noticed any difference but think it takes a few months to kick in. Good luck
Have you had any side effects? Do they know how long you will be on it?
I am taking it alongside pred for three months but don't know long term and I have only taken three doses (one a week) and so far no side effects. Blood test next week to check liver. So early days really, they say it could be months before you feel the benefit 🙁
Are you taking it to try and get off pred quicker?
That's what my rheumy thinks. They say after 3 years I have been on steroids too long but people on this site have been on them for much longer so I will have to see at the moment I am not tapering. I have no faith in what I am being told but will try anything
Has your Rheumy informed your PMR it shouldn’t still be around? 😳
They don't think of us as individuals, it's a case of one size fits all
Tell us about it! ..
Although mine didn’t -but I wouldn’t wish my experience on anyone… 🤦🏻♀️
Hope you get on really well and health concerns are given a clear diagnosis 🤗🌸
Thank you x
Is my inflammation under control? How to know?
General Double-Vision/Arteritis Question
Pain again on 9mg Prednisonone
Not PMR? Not sure what to do next
How would you know if LVV is flaring during a taper if it's asymptomatic? 
